Required ESL Screening: Mom Really Might Know Best

July 7, 2013 by nohandsbutours 2 Comments

My youngest just graduated from kindergarten. Come September, he’ll ride a bus, he’ll carry a lunchbox, he’ll have a pencil case. And so in preparation for all of that, we took him to the “big kid” school to register. I was given the usual forms–proof of immunization, emergency contact list, permission to access the internet, please oh please join the PTA….. Then a bright green paper asked if we spoke English in our home. Easy, yes. Was English your child’s first language? Well, No. What was their first language? Mandarin.

I turned in my forms and the nice woman at the desk glanced through them. At the green paper, she stopped. Oh, English isn’t his first language. “Hmm,” she said, “this will be flagged by the district and he’ll need ESL screening.” I told her it wasn’t necessary, that he no longer spoke Mandarin and that his English was fantastic. She said she understood, but that it wasn’t her call, district policy. I asked her if she wanted me to change the form to say Yes, English was his first language, just to save everyone the trouble.

“No,” she said, “Let’s be honest, and really, it’s no trouble. A woman named Mrs. Little will come to do his evaluation…..”

At this point, XiXi, who’d been listening quietly, piped up.

“Mrs. Little? Like Stuart Little? There’s this show, and it’s about a mouse and his name is Stuart and he gets adopted by a family, except they’re not mice, they’re people, and his mom, she’s named Mrs. Little, just like that lady that you said is coming to the school!”

The woman looked at XiXi. She looked at me.

“I think it will be a quick evaluation.”

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What I Thought I Knew about Hep B

May 7, 2013 by nohandsbutours 3 Comments

If you’d asked me seven years ago, right before we adopted our beautiful daughter, if I knew anything about Hep B, I’d have said sure. It’s a virus. It has something to do with the liver. What else do you need to know?

As it turned out, our daughter’s case taught us that there was a whole lot to know. And to be her best advocate, especially when experts didn’t necessarily agree on what should be done for her, I read everything I could get my hands on. I knew the lingo, knew the facts.

But now those facts are changing, and the things I thought I knew….well, I guess I don’t.

What I Thought I Knew:
Most kids with Hep B need no treatment at all. Basic, Hep B 101. This is what the doctors told me when we were researching the special need. This is what I’ve told countless mothers and fathers who are wondering if they should check the box marked Hep B on their special needs checklist. Kids are usually in the immune tolerant phase, I’d tell them, which means that although they have the virus, their bodies are ignoring it or tolerating it. The virus became part of them when they were mere babies and their immune systems weren’t mature enough to recognize the virus as a threat, so unlike adult immune systems that spot the virus from the get-go and raise some serious cain (and get rid of it completely 95% of the time), kiddos usually just kind of co-exist with the virus and will probably keep it for the long haul.

What Researchers Are Saying:
Kid’s immune systems may not be so tolerant after all. This is huge. New studies are challenging the basic premise of Hep B 101. In fact, one study found that older people with chronic Hep B seem to have weaker immune responses than the younger individuals infected with the virus. To quote one article:

Scientists from Bertoletti’s laboratory, together with clinical collaborators in the UK, isolated T cells from 44 people with chronic HBV infections between the ages of 10 and 30, the majority of whom were of Asian descent. Around 75% of the world’s 400 million people with chronic hepatitis B can be found within the region of Asia. They compared the immune samples to those from healthy age-matched controls, and showed that young patients infected with HBV expressed increased levels of virus-associated T cells, and these T cells displayed the ability to expand and produce pro-inflammatory signaling molecules known as cytokines, which are involved in antiviral responses. Furthermore, these HBV-specific T cells became more dysfunctional with age, the authors found, suggesting that the longer a patient is left untreated, the less effective the immune system becomes at clearing the virus.

They go on to say that the current measure of immune activity in people with chronic Hep B, the ALT, may not be the best indicator of who should get treatment. Most of the young patients don’t have labs that would cause anyone alarm. But, and here’s the biggie–they might be missing a window where they could clear the virus at a young age–a window that might be closed, or at least harder to open, when they’re older.

What Doctors Are Doing About It:
Studies are currently happening in big medical centers on both coasts, treating kids who previously wouldn’t have been considered for treatment at all. These kids have normal, or just slightly elevated liver enzymes. In the past, doctors would say that treatment of these kids would be a waste of time. Now, they’re being treated with either PEG interferon alone or a short-term antiviral followed by PEG. These studies are still in their infancy and it’s too early to say if they’ve been a success. But, from the few people I know who have kids in the study, some of these kids who’ve previously shown NO immune response to Hep B, with the help of PEG, are giving the virus a serious beating.

I remember years ago when I was considering treatment for our daughter, one of the leading world experts in Hep B said to me, “This virus will never be less a part of her than it is now.” That swayed me to the side of treatment. And for her, that was fairly easy because her labs were worrisome. She was one of the minority of children that most doctors would say needed treatment. She started PEG interferon as a 3 year-old. The PEG was off-label because it’s not FDA approved for kids with Hep B and she was the first Hep B child to ever receive PEG at our large urban hospital. A year later, not only was she better, she no longer tested as having the virus. It was beyond what we’d hoped for–the best possible result. I’ve always wondered if part of the reason for her success was her young age. Our doctor, who is involved with the current studies, seemed to wonder too.

My sincere prayer is that this research will lead us to a point when all parents of kids with Hep B can have the joyous experience of looking at a lab sheet, wiping away tears, and reading the words Hep B NEGATIVE!
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I Was Almost on NPR

March 7, 2013 by nohandsbutours 5 Comments

It was 2 weeks ago and I’d just dropped my son off for afternoon kindergarten. On the radio, a woman with some title that I fail to remember was saying how important it is for children adopted from other countries to have ties to that culture, how crucial it is that their parents make every effort to connect them with their motherland and seek out others who share their birth heritage.

Then, the host’s familiar voice, a voice that I hear every Monday through Friday at 12:30 said, “Have you adopted internationally? What’s your experience? Give us a call at…….”

I don’t know what came over me. I have never called a radio show. Ever. Giving it less thought than I probably should have, I pulled into a parking lot and dialed. The phone rang many times and I was about to hang up, when a voice spoke rapid-fire, with hardly a pause between words: “Hello NPR Are you adopted or have you adopted internationally?” I quickly said yes because it seemed like speed was what he was after. “Can you very briefly tell me what you would say on the air?” I spit out my story and he said, “We’d love to have you share that with our listeners. What is your name and where are you from? Turn off your radio and stay on the line……”

Then I sat there sweating. Oh dang. What have I done? Because, you see, I was kind of going to slightly disagree with the expert woman. Well, no, not disagree, because I DON’T disagree. Birth culture is important. Seeking out similar people is wonderful. Chinese New Year is cool. Mandarin class is a fantastic idea. But I also think there are other things that are just as wonderful, just as cool, and if a child wants to pick those things over say, Chinese Culture Camp, who am I to force feed chow mein when someone’s said “no thanks, I want the cheeseburger”?

As each caller finished, I held my breath, waiting to hear, “And now we have Eileen from Poulsbo….”

I tried to go over my story in my head so I didn’t stammer. I reminded myself to not say “Ummm” and under no circumstances should I laugh because I have a tendency to do that snort thing when I’m nervous.

I listened to the other callers–a woman adopted as a teen from Russia, a man who heads up a local chapter of Families with Children from China, a woman who had adopted a boy from Guatemala and had him in Spanish immersion…..

And then the familiar voice said, “I want to thank our callers, but unfortunately, we’re out of time for today….” And I sighed a deep sigh.

But I thought about my story for the rest of the day. Almost telling countless NPR listeners my views helped me figure out what my views actually are. So, I’ve shared this here before, but it’s been a few years, so bear with me. This is the story I would have told the radio audience:

A couple of years ago, I was at the mall with my then 5 year-old daughter, who’d been adopted at 11 months from the Guangxi province. As we were walking through the food court, we passed the counter selling Chinese food. My daughter heard the people speaking Mandarin and said, “Mom, I think those people are Chinese.” I told her I thought she was right.

Then she said, “I used to be Chinese.”

I had to stifle a laugh. “You’re still Chinese,” I said.

She gave me a strange look, shrugged, and said, “Kind of.”

It was a small interaction, but one that gave me a glimpse into how she sees herself. Evidently to her, being Chinese is all about the culture and the language, not necessarily the “look” or the name of the country written on your birth certificate. Since she doesn’t have that culture and that language, she feels only kind of Chinese. She very much identifies as an American, and rightly so, because she is.

Which makes me wonder, how much do we push? She’s happy. She’s confident. She’s American. In that interaction, should I have insisted that she IS Chinese, always will be Chinese? I took the “kind of” as an honest assessment.

For my part, when we first came home from China, I sought out a chapter of Families with Children from China. We went to their monthly dinners until the organizing family moved away and the group petered out. Some years I’ve hosted Chinese New Year parties at our home; but to be honest, some years the holiday completely slipped my mind. We’re friends with a local family of 6 girls, all adopted from China. Recently when my daughter asked if we could see them again, I said I would arrange something and made the comment that it’s fun that all of them are from the same place. She shrugged it off and just said, “I love their swing set.”

She connects more with the swing set than the fact that they’re from the same continent or have similar eyes. Will that change as she grows older? It very likely may. But for now, I don’t push all things China. We adore China and she and her siblings know that. But if she’d prefer soccer to Mandarin class, I won’t lose sleep over it. And if down the road she wants the Mandarin class instead of the soccer, I’m O.K. with that too. What I do think is crucial is that she feels loved and supported. Loved as a precious combination of China and the United States. Loved as a mix of nature and nurture. Loved as her own completely unique God-endowed spirit, a force the world has never before seen, and something that ultimately, can’t be claimed by either country.

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Hepatitis B: It’s an Easy Special Need…Except When It’s Not

February 7, 2013 by nohandsbutours 8 Comments

If you ever check out special needs adoption forums, one of the most commonly asked questions, certainly in the top 5, goes something like this: Which special needs are EASY?

It’s an honest question and one that parents who’ve experienced raising children with different special needs have tried to answer. I’ve jumped in many times to advocate for kids with Hepatitis B. It’s generally a very manageable special need and one that’s not associated with extensive surgeries or therapies or restrictions. These kids appear totally healthy and usually just need a blood test and doctor visit a couple of times a year. I feel very confident telling a prospective parent that a child with Hep B will most likely be just fine.

However, I do worry sometimes when I read claims that the Hepatitis B virus is “nothing” or that it’s no more a challenge than near-sightedness or that it’s “just a bug.” If a parent has perceived it that way with their child, wonderful. But it’s as impossible to make a blanket statement that every case of Hep B will be easy as it is to suggest that every heart murmur will be easy. Some will be, some definitely won’t.

I’ve been in the Hep B world for nearly 6 years and in those 6 years, I’ve seen some kids who’ve been at the extreme end of the spectrum. Kids with cirrhosis, kids who have to wait until they’re neurologically mature enough to handle a heavy-duty drug like interferon, kids with mutations that are difficult to treat, kids who need frequent monitoring for liver cancer. None of those things are typical, but they happen. And for that small minority of kids, they require expert attention. Since pediatric Hep B is thankfully uncommon in the U.S., there aren’t many doctors who are experienced seeing it, let alone treating it. There are currently only 5 doctors in the United States that the Hepatitis B Foundation considers pediatric Hep B experts. Some parents fly their kids to their appointments.

Would I discourage Hep B adoption? Not at all! It’s a common special need in Asia and these kids will usually do fantastic. But, even 6 years later, I can still remember the shock of our first appointment home in the United States. My 11 month-old daughter had worrisome labs. The doctor mentioned interferon, something I’d heard was almost never used. She wanted to see her frequently. I thought it would be just once a year. She’d be performing a liver biopsy on her in a few months. Like with a needle? I stammered, “I thought she was just a carrier?” The doctor then asked me what I meant by carrier. I honestly had no idea, I’d just heard the term on a forum and liked the sound of it. Anything with the qualifying word “just”, couldn’t be so bad, right? So when the doctor asked for clarification, I bumbled through this explanation: “Well, being a carrier means that she has this, but it’s just there. It’s not, you know, hurting her.” Our doctor, whose bluntness I later learned to respect, said, “If she were older, she’d qualify for treatment now. Her liver enzymes are double what they should be. Her viral load is over 8 billion. Every day she has this, it’s hurting her.”

So, while we advocate for those precious kids who have a special need that’s captured our hearts, we’re doing the prospective parents no favors by downplaying or ignoring the unlikely, but still possible. Give them the straight scoop and then encourage them that if they feel so inspired to adopt a child with this special need, they’ll love them and be able to handle the easy, which they’ll probably have, or the hard, which is out there too.


Family Medical History: How Much Do You Want to Know?

December 7, 2012 by nohandsbutours 1 Comments

I have a great-grandmother, Verna, who lived to 103 years old. She tended her garden and lived in her own home until the very end, passing peacefully in her sleep. Verna is a shining star on my family medical history. My own father had debilitating arthritis as a child, as did a great uncle. Autoimmune disorders of all types are abundant. Several ancestors struggled with substance addiction. There’s breast cancer on my mother’s side of the family. We tend to have teeth that rarely get cavities and hair that goes gray by 30. But losing our hair? Hasn’t happened in generations. I have an uncle who is 6’4, a brother who is 6’5, and when I topped out at 5’3, I knew my shortness came from the petite Pittman side of the family. On the Kelley side, allergies abound and if a family reunion were held during pollen season, Kleenex could sponsor the event. All in all, it’s a mish-mash of the mortal state and most of it, I rarely think about. But it’s nice to know.

For my youngest two children, their family medical histories are total blanks. Did his grandfather die of pancreatic cancer? Did her mother have high cholesterol? Is there an inherited, hidden heart defect? Did his dad fight alcoholism or battle OCD? Did her grandmother have Alzheimer’s? I have no idea.

Technology is such that now, with some money and little saliva, you can get a genetic picture. I was intrigued and late one night, I perused the website for one of the popular DNA testing companies. I was amazed. Did you know that from a sample of spit they could predict your odds of living to 100? Or of having restless leg syndrome? Or male pattern baldness? Or obesity? Or a tendency to overeat? Or freckles? It’s like a modern-day fortune teller looking into a crystal ball. Do they see a blue eyed child in my future? Or one with curly hair? And even if it’s stuff that I already know–like that my Asian children weren’t first in line when the freckle gene was distributed, isn’t it cool to have someone (fortune teller or scientist, either one) tell us something that we already know but they found it out in a cool way (crystal ball or cheek swab, either one)?

And did you know they could test for drug response? If you were on say, an antidepressant, would you be more or less likely than average to get relief? And if it did work, would you tend to relapse? Or be prone to sexual side effects? They can tell you if you may require a lower dose of blood thinner or if you might react poorly to cholesterol-lowering medications or if you’re genetically predisposed to heroin addiction. These could be useful things to know.

But the more I read, the more I squirmed. Say my son was at a high risk for Lou Gehrig’s Disease. It’s a tragic and fatal illness, and if his genetic map leads to that, I couldn’t alter the path. Would I want to know? Would I want him to know? What if my daughter has a stronger than average tendency toward bipolar disorder? Would I overreact and spend sleepless nights worrying about her normal teenage moodiness? If my son surprises us with a 4 letter word, would I secretly rush to check his paperwork and see what it says about Tourette’s Syndrome?

There is a place for genetic research, absolutely. A family medical history is a good thing to have. But how much do I really want to know? As it turns out, not much. I know that I love my children, whether or not we share one iota of genetic code. I know that I’ll be their mom through thick and thin. Through gout or migraines, through asthma or Celiac disease, through kidney stones or lupus. And for today, that’s all I need.


Language: Could he have kept the Mandarin?

November 7, 2012 by nohandsbutours 16 Comments

We met our son just a few month’s shy of his fourth birthday. He spoke clearly (clearly enough for us to understand many of his basic phrases), he had no speech impediments and was a good communicator. Our guide in his province said, “He speaks well and knows very much.” At home in the United States, a Mandarin-speaking friend spent an afternoon with him, playing cars and trucks on our playroom floor. XiXi counted Hot Wheels (he made it up into the 20s before running out of cars), correctly identified colors, named all of the animals in our toddler books, and showed that in his native tongue he was quite the accomplished chatterbox.

Before we traveled, I’d done some research. How long would a child his age keep his native language if he moved into an English-only environment? My guess was about 8-12 months, with the ability to understand holding on longer. This is what the research had to say:

One of the most shocking discoveries in the field of international adoption is the swiftness with which children lose their native language and the profound nature of that loss. In a situation of full English immersion, it takes these children (3-4 year-olds) seven to twelve weeks to reduce their expressive language to a practically non-functional state. Their receptive language may stay four to six weeks longer, but it is barely functional even in familiar situations with the support of gestures, voice tone, and other non-linguistic means of communication.

Twelve weeks! As I heard my newly-adopted son chat with our friend, a woman he called Ayi, I thought that surely, in his case, he could retain the language. So we arranged for more meetings with Ayi, we sought out others who spoke his language, we even frequented Chinese restaurants.

What we quickly realized was that we were swimming upstream and fighting a tide that was more powerful than our obviously meager efforts. The first few times our son met with Ayi, they chatted away effortlessly. After just a few weeks home, however, I saw a fairly dramatic change. She’d speak in Mandarin, he’d answer with nods or head shakes or answer in rudimentary English. He uttered not a single word of Mandarin. Not long after, we happened to run into Ayi at the grocery store. He loved her and greeted her warmly and she spoke to him in Mandarin. He stood there, stone-faced, and said nothing. She repeated herself and still, he remained quiet. Then she asked him the same sentence in English and he excitedly answered her. We’d been home less than 2 months.

At the Chinese restaurant, our server asked XiXi in Mandarin how old he was, a question even I could understand. Once again, our chatterbox remained quiet. I repeated the question and prodded him to answer. He stuck his lower lip out and looked away. I whispered in his ear, “Say, ‘san sway’.” He shook his head. The waitress asked if he knew any Mandarin. I don’t know why I felt the need to push this, but I prodded him again, “Say ‘san sway, XiXi. San sway.” Finally, he angrily whispered “san sway” and ate his lunch. It was such a little interaction, but it signaled something I hadn’t counted on. As much as I wanted him to keep his native language, he might not be interested. By twelve weeks home, he completely refused to speak Mandarin and was well on his way to becoming fluent in English. Now home a year and a half, I’m sad to say that he can’t understand even the most basic Mandarin words and phrases.

Do I think we could have done things differently and gotten a different result? I honestly don’t think so. If we had a native speaker in the home, we’d have had a shot. If we’d had Mandarin immersion in our schools, maybe that would have helped. But what we learned, was that not only did our son not have enough opportunities to hear and use the language, he didn’t have the motivation. In his new world, Mandarin was not helping him. English was the language of his family; Mandarin was the language of his orphanage. In his eyes, English was the language of his future; Mandarin was the language of his past.

If I could give one piece of advice to families adopting toddlers and older children from China, it would be this: video tape them speaking Mandarin immediately. I guarantee, the language will be gone quicker than you ever thought possible and you and your child will look at those videos like a dream out of the past.



Out of the Sketch Pads of Babes

October 8, 2012 by nohandsbutours 1 Comments

This is the night we’ve waited for!
KICK!
Always a treat we have in store
KICK!
We love each other more and more…
KICK
With every family night….

I’ll spare you the rest.

My teenagers would turn 10 shades of red if you happened to look into our windows on a Sunday night and see us in a circle, holding hands, singing and kicking. The song signifies the start of our weekly Family Home Evening, something encouraged by our church for decades as a time to discuss gospel principles and enjoy family togetherness. The song and dance are certainly not part of any advised curriculum, but a tradition started in my husband’s home when he was just a boy.

With the arrival of each of our children from afar, it’s been with great joy that we’ve added them to the family circle……both literally and figuratively. Along with all of the things that need to be taught to a new child, the one we have found most rewarding is the fact that they have a Heavenly Father who loves them. A Heavenly Father who has always loved them.

Last week for Family Home Evening, our youngest daughter, our sweet Cholita, had the assignment of lesson. She’s had that assignment many, many times before, but this time she wanted to do it completely by herself. She chose her topic early in the day and hid herself away in her room, preparing her lesson. When Family Home Evening started, she hung up a picture she’d drawn to contribute to the atmosphere.

“But,” she shyly said while pointing to her drawing, “I’m not sure if this is REALLY what He looks like.” We assured her that artists have struggled with that same problem for centuries.

She went on to give her lesson on God’s love for us and how He wants us to love one another. It was a wonderfully pure, sweet lesson and I will always treasure her darling picture. Not only did I notice that there are truly no hands but ours, but I feel quite confident that she got His smile just right!


The sincerest form of flattery……Or will the real XiXi please step forward?

August 7, 2012 by nohandsbutours 9 Comments

When we adopted our nearly 4-year-old son, it felt completely natural and right for him to copy the sibling closest to him in age, his 6 year-old sister. He needed a tour guide to escort him through his new life and she was mostly happy to fill that role. What I didn’t realize was that over a year later, I’d be trying to break him from his “minion” status and get him to express his own opinion. Or find his own opinion.

In our early months together, if big sister asked for a popsicle, whether or not he actually knew what the word popsicle meant, he was sure to wave frantically and yell “Me too! Me too!”

Totally understandable. He didn’t want to miss out, and yet the poor kid wasn’t sure what anybody was saying, and so of course he was eager to jump on any passing bandwagons, be they popsicles or brussel sprouts. And even if he didn’t particularly like the brussel sprouts once he found out what they were, if his sister liked them, I guarantee, he’d force a smile, swallow another, and ask for more. That is, of course, if she asked for more.

Once we got past the language hurdles, the I-must-do-everything-my sister-does mentality stuck. Case in point, last week’s trip to the grocery store:

*The kids pick a red fire truck cart and squeeze in behind the double steering wheels.

*In the produce section, Cholita announces that she doesn’t want to ride in the fire truck and wants to walk.

*XiXi cannot exit the fire truck fast enough.

*Now I’m pushing an empty fire truck with two kids trailing, one clearly annoyed, and one watching his sister closely for her next move.

*In the bread aisle, Cholita says that she actually does want to ride in the fire truck and resumes her post.

*XiXi jumps in so fast you’d think he was headed to a real fire.

*In the canned goods section, Cholita says that she now wants to ride in the front seat of the cart.

*XiXi almost falls out of the fire truck, yelling “Me too! Me too!”

*He sees there is only room for one, looks completely at a loss, and is soon in tears.
Now, I have 5 children and understand that for the most part, this is normal sibling stuff. The youngers copy the olders for various reasons, sometimes just to annoy the heck out of them. But I really don’t think that’s XiXi’s intention. I believe he honestly feels lost without her guidance.

Window shopping with them yesterday in our little downtown, both with spending money burning holes in their pockets, XiXi hardly glanced at an item if his sister hadn’t already shown interest. When we’d gotten to the last shop and I asked them if they wanted to buy something, I purposely asked XiXi first and told Cholita that she’d get her turn to tell me her choice in a minute. XiXi bit his thumb nail, nervously glanced at his sister, and literally could not come up with an idea on his own. Cholita, not necessarily the queen of patience, jumped in that she wanted the pen with all the different colors. I don’t think XiXi actually said “phew!”, but the relief was certainly there in his voice when he said, “Yeah! The pen with the different colors! That’s what I want too!”

And then, because she’s decided that having a minion isn’t all it’s cracked up to be, Cholita said, “Never mind. I think I’ll get something else instead.” But she wouldn’t tell him what that something else was. It was torture for the poor kid. Pure torture. I asked my teenaged daughter to take Cholita to buy whatever it was she wanted to buy and I knelt down and asked my sweet little boy, “XiXi, do you really want the pen?”

He bought the pen. His sister bought a ring. And although Cholita likes the ring, she’s been enviously eyeing the pen, because I think that’s really what she wanted all along. She’s fairly easy to read that way. But XiXi?

We’re still learning. Completely in love. Completely excited about the journey. But still definitely learning.


A Mother is Only as Happy as……

July 7, 2012 by nohandsbutours 1 Comments

Her saddest child.

I don’t know who said it, but dang it if it isn’t true.

When all 5 of my children are happy (not necessarily ecstatic about life, but you know, content and satisfied), it’s fairly easy for me to follow suit. Life is good. But when one of those 5 precious souls is bogged down with sadness, I go there. And I go there quickly.

Is this just the natural state of motherhood? Has it always been this way? Were our great-great grandmothers similarly dependent on the vagaries of their offsprings’ mood swings or were they too busy hand washing clothes and darning socks to worry about why little Edith seems down? Something tells me that they didn’t so fully take on their children’s issues and make them their own. But maybe I’m wrong.

I do know that the fathers I’ve observed seem more a master of their ship, less likely to be rocked by the waves in their children’s lives. A father is only as happy as his saddest child? Hmm, maybe. Growing up, my own father, who in my later years was a single parent, could calmly read the newspaper while any number of family dramas exploded around him. His stock answer to my teenaged woes? “It’s good for you.” Occasionally followed by, “Is this your time of the month?”

So how do we, as mothers, strike a balance? How do we love and cheerlead and support without being pulled under ourselves? I currently have a child frantically treading water and I’d love to know…….

What have been your life preservers?


Hep B Parents: 10 Reasons You Should Get Yourself to Philly

March 28, 2012 by nohandsbutours 5 Comments

Hepatitis B Foundation 2012 “B” Informed Parent Conference
An Outreach Program for Parents of Children Chronically Infected with HBV
Saturday, May 19th
9:00-4:30
Holiday Inn Express Midtown
1305 Walnut Street Philadelphia, PA

1. The “B Informed” Conference for parents of children with Hepatitis B happens just once a year. You do not want to miss this.

2. You will get answers. No matter where your child is on the spectrum, I know you’ve got questions. You’re going to get those questions answered. This isn’t a doctor’s appointment, there isn’t a waiting room full of patients, the doctor’s hand isn’t already on the doorknob. Ask all the questions you want to ask and ask until the lightbulb turns on and you get it. You’ll go home a more confident, better informed advocate for your child.

3. The Hepatitis B Foundation is amazing. You’ll leave feeling like you’ve gained new family members—some seriously smart cousins who also happen to be fun, encouraging, and supportive. Years ago, when I went to my first conference, the president of the Hepatitis B Foundation, Dr. Timothy Block, sat with a group of parents at a table and using Coke cans and plastic silverware as props, explained viral mutations. It was interesting. It was informative. I understood it! These people do not grow on trees.

4. Dr. Barbara Haber, Pediatric Hepatologist at Merck & Co. The Hepatitis B Foundation calls them “The Big 7”, the seven hepatologists who are the thought leaders in research and treatment of kids with Hep B. This conference is bringing together two of them. Dr. Haber has seen it all when it comes to HBV and will present for an hour, sharing her extensive knowledge and experience.

5. Dr. Karen Murray, Division Chief of Pediatric Gastroenterology and Hepatology at Seattle Children’s Hospital, another of “the Big 7”, will talk for an hour specifically about HBV treatment options. Nearly 6 years ago when we came home from China with our daughter, there were two treatment options for children with Hep B. That’s changed now and is continuing to change. Dr. Murray is actively involved in research and will share what the future holds for HBV treatment–not just for kids in the immune clearance stage of the disease, but for the majority of kids, those in the immune tolerant stage as well. And if you don’t know what that means, get to Philly!

6. Dr. Thomas London has had a distinguished career as a leader in Hepatitis B research and was actually a member of the team that first discovered the virus. This man knows HBV like few people in the world. Years ago, at a B Informed conference, Dr. London took the time to look at my daughter’s labs and offer his thoughts. This man helped discover the virus and he shared with me what he’d do if this were his own child! I listened closely. This year, Drs. London, Murray, and Haber will spend an hour taking questions from the audience.

7. Paul R. Cohen, Esq., a partner in the law firm of Jenei & Cohen, is a new and welcome addition to the conference. Every year, invariably, parents ask questions along the lines of: “When do I have to tell someone about my child’s HBV?” or “What are my child’s rights?” or “Can a school refuse my child admittance based on their HBV status?” These are sticky questions, and we’ll get expert answers.

8. It’s Free. Yes, FREE! And that even includes breakfast and lunch. You’ll only need to get yourself out to Philadelphia. You can probably score a plane ticket for less money than you’ll spend on your child’s next set of labs.

9. Support. You’ll get it. HBV can be a lonely special need. Many parents don’t feel comfortable disclosing even to close friends. Here, you’ll be surrounded by parents who understand exactly where you’re coming from.

10. Philly Steak and Cheese Sandwiches. I’ve heard they’re really, really good.

Pre-register for the conference through the Hepatitis B Foundation online at www.HepB.org or by phone at 215-489-4900.



Hepatitis B: Debunking the Myths

March 8, 2012 by nohandsbutours 4 Comments

ADOPTING A CHILD WITH HEP B WILL PUT MY FAMILY AT RISK: A few years ago, a woman looking to adopt a special needs child sent me several emails, asking questions about Hepatitis B. After a fairly long, friendly exchange, her last email included the following line, “I guess I’m just not comfortable bringing in a child that would put my other children at risk.” I sat there, mouth hanging open, wondering how, after all we’d talked about, she still had this completely false idea. I also wondered if other people had that same misinformation. Did other people look at me and think that I am O.K. with putting my other children at risk? Because I’m not.

We are incredibly blessed to have a highly effective Hepatitis B vaccine. In most states, this series of shots is required for school admittance. When a family plans to adopt a child with Hep B, they should first make sure everyone has had the full series and then take the added precaution of getting everyone’s titer checked to be sure they are immune. From there, well, don’t worry about it. You and your family are protected.

YOU CAN GET HEP B FROM EATING CONTAMINATED FOOD: With the alphabet of hepatitis viruses out there, it’s no wonder there’s confusion. Hepatitis A, the most common in the hepatitis family, is the one you get from contaminated food and water. Hepatitis B is passed through blood to blood contact. This can be from mother to child, through infected needles, or sexual contact.

HEP B CHILDREN WILL LOOK AND FEEL SICK: I can give this a resounding NO! Never once has someone looked at my children and asked if they are ill. They are the picture of health. They don’t have yellow eyes or skin, they don’t tire more easily than other children, they don’t have abdominal pain. They look and feel great.

I met a woman years ago who first learned of her Hep B status as a young adult when she went to give blood. She was completely shocked that there was anything amiss and went straight from her doctor’s appointment back to the Olympic Training Center! Obviously, her Hep B was not slowing her down.

THE BIRTH MOTHER OF A CHILD WITH HEP B WAS A DRUG USER OR SEX WORKER: Hepatitis B is endemic in China. Of the estimated 350-400 million people infected with the virus, one third live in China. In Asia, the most common way a person becomes infected with Hepatitis B is through the birth process. Their mother had it, who probably got it from their mother, who got it from their mother. Many of these mothers may never even have known that they had the virus themselves, let alone that they were passing it onto their child. In some parts of China, it’s estimated that as many as 1 in 5 people are infected. These are not individuals living on the fringes of society.

WHEN THEY GROW UP, PEOPLE WITH HEP B CAN NEVER HAVE A NORMAL SEX LIFE: Again, what a blessing to have the Hep B immunization series! Not only can they have a normal sex life, my daughter can have children and those children, through a series of shots started right after birth, have over a 95% chance of being completely Hep B free. The cycle of mother to child transmission can stop dead in its tracks.

HEPATITIS B IS RARE: Worldwide, 1 out of every 12 people have Hep B or C. After a friend of mine learned of my daughter’s Hep B status, she said, “I’m just so shocked. I’ve never met a person with hepatitis.” I told her I was sure she had, she just didn’t know it.

THIS IS A TAXING SPECIAL NEED: This is a very, very manageable special need. Your child will need blood work and will see a pediatric gastroenterologist every 6-12 months For most kids, that’s the extent of the need. For some, they will require treatment. Depending on which treatment is chosen, they will either take a pill or get shots. Our daughter needed treatment and we gave her one shot a week for a year. I wouldn’t necessarily want to do it again, but it was very manageable.

IT’S BETTER FOR THESE KIDS TO REMAIN IN CHINA WHERE THERE’S MORE ACCEPTANCE TOWARD THE VIRUS: One would think that with such a large percentage of the population infected, there would be more acceptance. The opposite is true. Discrimination runs rampant and although laws have recently been passed insisting that these children be allowed to attend school, there are still children who will be denied a basic education because of the result of a blood test. In China, there is a terrible stigma associated with the virus.

THE OUTLOOK IS POOR FOR CHILDREN WITH HEP B: Our daughter’s doctor is one of the foremost experts in pediatric Hepatitis B. She’s seen it all and remains very, very optimistic. At a conference, I spoke to another expert. I asked her how many liver transplants she’s had to do because of Hep B. She said none. I asked her how many cases of liver cancer she’s diagnosed as a result of Hep B. She said none. Although there are very real risks, the great majority of people with Hepatitis B will live long lives and die of something completely unrelated to the virus they carry in their livers.

When people ask me about parenting a child with Hepatitis B, I tell them it’s no different from parenting any other child.

Just enjoy them.



An Anniversary, a Hope, and a Video

January 7, 2012 by nohandsbutours 0 Comments

It’s been nearly two years since our youngest daughter had her last shot of PEG Interferon.  Two years since we happily bid farewell to the sharps container and the alcohol wipes.  Two years since we left behind the marathon naps and achy tummy and bloody noses.  And two years since we learned that our daughter no longer tested positive for Hepatitis B.

Which brings me to the hope part of this anniversary.   When our daughter began PEG, it was not approved for pediatric use with Hep B.   Another type of interferon, Intron-A, had been used for many years with children, but not PEG, the extended release version of interferon that took the number of shots down from three times a week to only once a week.  Although the convenience was a factor, the biggest reason we pushed for PEG was that our daughter’s doctor felt that it might have a slight edge over Intron-A in achieving success.  If we were going to spend a year doing shots, a year getting weekly blood tests; if we were going to inject our little girl with something that would make her feel sick, we wanted the very best stuff we could get our hands on.  As it turned out, getting that PEG delivered to our door wasn’t so easy.   Because it wasn’t FDA approved for Hep B, our insurance company said they wouldn’t pay for it.  Our doctor wasn’t surprised and wrote a long letter explaining why our daughter’s situation was unique and why she felt PEG was her best bet.  The insurance company wouldn’t budge.  I looked into purchasing the PEG out-of-pocket.  It would be $1,000.00 per shot, once a week, for a year.  In addition, there would be the fees for the regular lab work, and unbeknownst to us at the time, another $700 per shot medication she would need sometimes up to 3 times a week to counteract some of the detrimental effects of the PEG.  Out-of-pocket wasn’t going to work.  So I gathered all the information I could.  In the dark den, illuminated by the glow of the computer screen, I spent many late nights taking notes on adult Hep B usage of PEG or on the safety of PEG used in pediatric cancer patients.  I sent all the information to the insurance company and filed an appeal.

With the appeal process, the insurance company sends the patient’s information, and anything else the family wants to include, to another specialist in that field, one of their own choosing, and the decision is in the hands of the doctor.  Within a week, I heard that our insurance company’s decision had been overruled and that a refrigerated package of PEG would be arriving on our doorstep whenever we wanted it.  I happily paid the monthly $35 copay.

And now, in small part due to my daughter’s success, doctors at major hospitals on the East and West coasts are recruiting children with Hep B for a research trial of PEG interferon.  They plan to combine it with an oral antiviral, hoping that the lowered viral load will give the PEG the edge that it needs to wipe out the virus. I don’t envy those parents or children the year of treatment.  It’s not fun.  But I do hope and pray that when they pick  up lab results at the end of that year, in the column where it says: Hep B Surface Antigen, next to it will be the blessed word NEGATIVE.

In honor of this anniversary, I wanted to re-post my little girl’s video.  She was 4 years old when she told her story.  She sounds so babyish compared to her current 6 year-old self, but at the same time, I’m impressed with her maturity and strength.  Always have been.

Back to School–Here and in China

August 7, 2010 by nohandsbutours 1 Comments

My littlest one, my almost five year-old Cholita, is ecstatic about a certain date circled in red on our calendar.  It’s not her birthday, it’s not Christmas, it’s the day she’ll head back to school.  She adores all things scholastic–sharpened pencils, little chairs, worksheets, story time, sharing time, recess, and don’t even get me started on the book orders…..


In China, her school experience would likely have been very different.  In fact, she probably wouldn’t have qualified for an education at all.  This was not due to her orphan status (although that certainly wouldn’t have helped), but solely based on the results of a blood test.  Last year in a petition, thousands of Chinese citizens appealed to their government on behalf of their children.  I could hardly read some of their entries:

From Yunnan: I have endured enough to be a Hepatitis B patient, but my child is too young to understand why he can not go to kindergarten like other children. Every time he looks at me with inquiry, my heart breaks. When will it come that my child can get an equal opportunity?

From Hubei: It is not our fault being infected by the virus and we do not desire too much sympathy and help. All we need is the right to be treated equally and the fair competition. We are impeded in schooling and refused by employers in so long a time. The determination of standing on our own legs therefore becomes faint in reality. In many times I almost cannot help yelling out the voice in my heart: how could we survive in such a society?

From Guangxi: I was just admitted by Jilin University in 2008 while I was diagnosed Hepatitis B in the entrance physical examination and was thus forced to quit schooling. What I have been working so hard for, turns to be meaningless. The sunshine in my life dims. I have no idea what I should do in future. I can not help wondering: when will this situation be changed?

From Guangdong: In current China. it is almost of no use for HBV positive youth to work hard. No matter how diligent, excellent, and noble they are. The tag of POSITIVE is attached to them forever.

Last year at this time, I celebrated a headline from a Beijing Newspaper, “China’s Kindergartens to Take Normally Functioning Hepatitis B Children”.  It seemed such a momentous step in the right direction.  Unfortunately, the reality is that the stigma is still strong and the hope of equal rights in Chinese education is still far from realized for these children.   Instead of an outright denial, a parent is now required to produce “medical recovery documents” to show that their child is no longer infectious.  Most children with Hepatitis B will never clear their virus.  They may get to a point where their viral load is undetectable, but it’s doubtful that will happen during childhood.  So even with seemingly hopeful legislation, they can still be denied a basic education.

This is something I simply cannot fathom.  I cannot read those pleas from parents in China and not think that that would have been my daughter–a young girl with an amazing mind, frustrated and angry that the world is passing her by.  What a tragedy.

My Baby Tells Her Story

July 7, 2010 by nohandsbutours 23 Comments

It’s been less than six months since my daughter finished her year-long treatment with interferon.  The needles, the sharps container, the smell of the alcohol wipes, that whole experience has quickly become a distant memory.  At age four, it’s doubtful that my daughter will remember anything about it into adulthood.  That’s wonderful, but at the same time, I want her to remember.  I want her to know beyond a shadow of a doubt that she’s always been a fighter.  She’s always had courage beyond her years.

I didn’t want to rely just on my telling of the story.  I hoped to preserve something that would capture her, the girl she is right now with the scratchy little voice who could talk about such big things.

We stand in awe of her amazing result, but just as amazing, just as awe-inspiring, is her tenacious spirit.  We feel so blessed to call her our daughter.

Parties, Cell Phones, and Mercenaries: A Hep B Primer

March 6, 2010 by nohandsbutours 1 Comments

Have you read many medical journals? Have you perused through any articles in the Journal of Gastroenterology? Let me tell you, I’m not completely convinced they’re written in English. So when my big kids started asking questions about their sister’s hepatitis, I had to get creative. If you happen to be a pediatric gastroenterologist/hepatologist, just look away.

There’s a party going on in Cholita’s liver. It’s been going on most likely since she was born. These party-goers (Hepatitis B virus) are not the type your parents would want at their house. One look at them, and you know they’re trouble.
The dad sitting on the porch (immune system) is unfortunately clueless. This is a newbie dad (a baby’s immune system) and he just hasn’t had enough life experience to know a bad actor when he sees one…..Seem like nice young men….. A more experienced dad (adult’s immune system) would have seen these guys coming from a mile away and gotten rid of them before they could even step foot through the picket fence (acute infection= less than 6 months).
But this dad is naive and the thugs soon have a rip roaring party going on in the liver house. The partiers are having such a great time, they keep texting their friends (replication) and pretty soon the house is bursting at the seams (high viral load). So the party goes on and things start to get a bit messy (inflammation). Dad continues to think all is hunky dory (immune tolerant phase). This can go on for years.
Eventually, Dad wises up and when he does, he’s not pleased with what he sees. He grabs his water gun and starts shooting. Unfortunately, these thugs have jumped onto the backs of his sweet little babies–the liver cells. So, he’s shooting at the thugs, but when he hits a thug, he also hits a liver cell. Virus thugs and liver cell babies are falling in large numbers (high ALT). Thankfully this dad has LOTS of liver cell babies and when one of them goes down, another one grows and takes its place. He keeps shooting and the party seems to be clearing out (viral load going down). Unfortunately, the thugs don’t really want to leave. They love the liver house and keep texting their friends. It’s an all out battle (immune clearance stage). Can the immune system dad shoot faster than the virus thugs can text? Sometimes he can, but most often he can’t.
The immune system dad is working hard, killing off thugs in large numbers, but sometimes he needs to rest. Sometimes he needs to refill his water gun. When that happens, the thugs go into texting overdrive. Dad comes back with his full water gun and sees that the party is even bigger than before. And so the battle goes on. With thugs and liver cells dropping like flies, you can imagine that the carnage gets a bit messy and the liver house is starting to show some wear and tear (fibrosis). Poor dad isn’t making progress and the neighbors are complaining, so we need to send in reinforcements. We have two options: mercenaries (interferon) or cell phone smashers (antivirals).

The mercenaries are well-muscled killing machines. They make dad’s water gun look seriously wimpy. Now, we like having Rambo on our side, but frankly, he makes us a little nervous too. He’s shooting away at the virus thugs and mowing them down in great numbers, but he’s also a little unstable and sometimes he shoots at completely innocent party-goers, just hanging out at the punch bowl (platelets, neutrophils, red blood cells, etc.). Anyway, what we hope the mercenaries can do is put an end to this party all together (stop replication, HBeAg-). The very BEST thing that could happen would be if the mercenaries, with the help of dad and his water pistol, could wipe the thugs out so thoroughly that a permanent guard is placed on the porch (surface antibodies) and the party can never start again.

If mercenaries aren’t your cup of tea, there’s also the option of the cell phone smashers. They’re trying to stop all of this texting-your-friends nonsense (replication). The only problem with this, is that the thugs are determined to keep the party going. Maybe you can smash most of the cell phones, but now a few have showed up with steel-plated cell phones and our antiviral cell-phone smashers can’t seem to stop them (mutations). Pretty soon, everyone has the steel-plated cell phones and we need to try a different breed of antiviral cell phone smasher. It might work, it might not. There are only so many cell phone smashers and the virus keeps making stronger cell phones that are harder and harder to smash.

So Cholita’s party was out of control. She had so many thugs crammed into her liver, we couldn’t even count them anymore. Somewhere over 5 billion. Daddy immune system shot millions of them down, hundreds of millions as a matter of fact, but when he took a break to reload his water gun, a billion snuck back in. The doctor took a little sample of Cholita’s liver house (biopsy) and it confirmed that the party was making a mess (fibrosis). We knew Rambo could be dangerous, and yes, he made us nervous, but Daddy immune system needed help. If he was willing to keep shooting with his water pistol, we’d send in the machine guns.
At the start, the machine guns seemed to be winning. But as time went on, the partiers just turned up the music and texted faster than ever. At the very end, somehow, miraculously, not a single thug could be found. It was time for the mercenaries to clear out too, and so once again, we’re left with only Dad on the porch with his water pistol.
In two months we’ll check to see if the thugs are still gone and if a permanent guard has been installed at Cholita’s garden gate. For now at least, the party’s over. We’re hoping forever.

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Mary's daughter

August 31, 2009 by nohandsbutours 0 Comments

by Mary, mom to a daughter from China with Hepatitis B

It all started after watching three beautiful Chinese girls in dance class with my daughter each week. I had time to sit and chat with the mother who adopted these three beautiful girls from China. Each week we talked more about the adoptions. Adoption began to weigh heavily on my heart more and more. I had discovered that I could no longer have any more biological children. I had one biological daughter and after she was born I was diagnosed with something called Premature Ovarian Failure. I was really devastated and had come to the realization that I would only have the one child. My husband and I had discussed adoption, but I was not for it at all. I didn’t think I could love someone else’s child as my own. After many talks with this mother at dance class I realized that a Chinese adoption was God’s way of sending me a beautiful daughter that I wanted and needed.

In February 2006 we signed the contract with Living Hope Adoption Agency in PA. We began the paper chase that lasted until August 2006. We were not logged in until November 2006 after much dispute over getting papers translated to go to China. We were so relieved to finally be able to finish the paperwork and begin our wait time. Little did we know that the wait time was now up to 2 years. We were told it would only take 6 to 9 months after we were logged in. I was so sad by this news. I didn’t feel I could wait this long. Each day passed and the wait time kept increasing. After the third home study update we had to make a decision of whether we were going to continue with the adoption. It was draining us mentally and we didn’t want to continue to wait. I had seen a lot of children that were adopted from China with very little special needs appearing on our adoption agency website. I begin to ask the special needs coordinator about these children. She advised us we could complete paperwork to be put on the waiting list for a special needs child. She said it would not interfere with our normal log in date if we didn’t choose a child. We completed the paperwork and after mailing it back discovered we were now way down the waiting list. We had 32 families in front of us waiting for a special needs child. Again the emotions were draining us. We knew we would probably get our referral before we were offered a child with special needs.

In the fall of 2007, we decided we were only going to give ourselves to January 2008 to have a daughter from China. We just felt we could not continue this roller coaster anymore. In December 2007 I received a call from our adoption agency on my voice mail at work that they wanted to talk to us about a little girl that needed a forever family. I called the agency back and they were all gone for the day. I just could not sleep that whole night wondering about this little girl. I called first thing the next morning to find everyone in a staff meeting. I had to wait hours for someone to call me back. When I got the call I begin to take notes and I was so nervous I didn’t write everything down. Our agency said they had a 4 year old girl that had Hepatitis B and needed a forever family. I had no clue what Hepatitis B was. We told the agency we would review her file.


When we got the file we feel in love with this little girl. We were so nervous and skeptical after reading all the issues with Hepatitis B. I had already made up in my mind that we would pass and wait for another child that did not have a contagious disease. I was very frightened that if I brought this little girl into our family that my biological daughter would catch the disease or that some other family member would catch the disease. I had already spoken to two doctors and both were discouraging about this disease. I was very scared to be honest with you. Then Christmas day my biological daughter got a very high fever. I called the doctor the day after Christmas and they wanted to see her. At the end of the visit the doctor asked me if I had any other questions. I said yes I do, and asked her to explain Hepatitis B. I told her that I had already spoken to a doctor in the office but I wanted another opinion. She begin to explain that Hepatitis B was spread from one person to the other by blood. She said it was not easily spread. I had read on the CDC website that it was spread through salvia and other bodily fluids. I was thinking that sneezing, coughing, and eating after one another would spread the disease. It was misleading on the website. It is spread by blood not with everyday casual contact of the individual. This doctor told me her personal opinion that if she had to make a decision of adopting a child with Hepatitis B that she would not hesitate in any way. It was as though my biological daughter had gotten sick for a reason. I needed to speak to the doctor to make my decision. I knew in my heart I must continue with the adoption of this 4 year old girl.


My husband had already known from the beginning that he wanted to adopt her. I knew after that discussion with the doctor that there was no way I was not going to adopt this 4 year old girl. She had waited in the SWI and foster care for 4 years of her life for her forever family. She had seen friends come and go and she remained. She needed a family to love her forever regardless of her health. We signed the paperwork to accept her and the time went by so fast. In March 2008 we received our daughter in China. She was not like the other children who were crying in the crowds. She came running to us and gave me the biggest hug you have ever seen. She melted our hearts away with her beauty and love for us. She has adjusted wonderfully with our family. She gets blood work every 3 months. It is tough to watch her get the blood drawn but she is a real trooper. The GI doctor is watching her blood work closely to see if her body if trying to fight off the disease. If and when she begins to fight her disease is when liver damage can occur. This is the reason for the blood work every 3 months. When she begins to fight the disease she will begin medication at that time to help protect her liver. We just pray every day that her body will overcome this disease. Please open your hearts to adopt from China and don’t hesitate about Hepatitis B. It will change your life forever.


If you decide to adopt a child with Hepatitis B please do keep in mind that their medical condition needs to be protected, and their medical condition does not need to be shared with everyone. We have only shared her medical condition with immediate family. You will be surprised how many frien

ds you may lose when they discover your child has a contagious disease. It is those who do not understand the disease like me at first that are scared of the disease until they are educated. Educate those you share your child’s medical condition with. We were advised by our doctor to be vaccinated against Hepatitis B, and when our daughter gets a cut or scrap we use gloves at all times. Your child will have this lifelong disease and she/he should not be treated any differently than any child, so think first before you share their medical condition. It is something you can never take back once you share.

Naomi ChuYu

May 4, 2009 by nohandsbutours 0 Comments

by Amy, mom to Naomi from China with cleft lip and gumline, Hep B and an abundance of joy

Our adoption journey started in 2002. My first born son was just 2 years old. We were at an Easter party when a friend stopped by with her brand new daughter from China. She did not get out of the car because her new little one was screaming. I peeked into the back seat of the car and saw the cutest, saddest, maddest, sweetest little China doll. It was from that moment that I knew I had to have a daughter from China.

Several years later the same friend was in the process of adopting her second little one from China. She was looking at the agency’s SN list and saw a little one with Hep B. She works for a GI doc who happens to be Chinese, so she asked him to take a look at a SN little girl with Hep B. His response was, “looks good, but what is the special need?” Her Doctor/boss did not view Hep B as a SN and told her to “go for it” as Hep B was most often very manageable. That little story got tucked away deep in my memory bank.

Fast forward a couple of years to December 2003 when my second son was born. We now enjoyed two wonderful boys yet we still wanted a daughter. Because of the overwhelming number of boys in my husband’s family, he figured a girl wasn’t in the cards. I brought up adoption often, but he just felt done. We had our two great kids and he did not want to be out numbered. There were a many nights I went to bed sad. I so desperately wanted my daughter from China but knew that we both had to want her. I finally dropped it… I was not going to talk about China anymore.

Out of no where, in December 2006 I was sitting on the couch, Pete on the floor when he looked up at me and said “ I want a daughter- let’s adopt”. We selected our agency (the same agency that brought my inspiration home to be with her momma) and got going on the mountains of paperwork. We had a LID of June 4, 2007 for a NSN child. After waiting almost a year and figuring we would be waiting at least another 5, we decided to switch to SN. Our son has Noonan syndrome so we knew we could handle some special needs, as he is a joy and a blessing. His milestones brought so much joy to us. When it came time for us to fill out our SN checklist, Hep B seemed like an obvious choice. Several others however, were much more difficult.

We started looking at the SN list and I became a bit obsessed. The looking, losing, locking and sometimes dismissing of files was absolutely draining. We found the selection process completely unnatural and when we did not agree on the child for one reason or another, had to keep in mind that we must both agree 100% before saying yes. Information from China is often incomplete or inaccurate so we sought out help from several universities on the medical information. We each had our hearts broken and sometimes questioned ourselves for having the ability to ever say no to a child in need, no matter how severely it may impact our family. This part of the journey I would not wish upon my worst enemy. It was very hard and painful.

August 13, 2008 I had a dream that I woke up looked out our bedroom window and saw a beautiful blue sky with a Cherry blossom tree blooming . . . That very morning we got “the call” at 7:15. Myriam told us we had an 11 month old baby girl with a cleft lip and palate with Hep B. I immediately fell in love and the excitement was indescribable. Pete was a little hesitant but gave the go-ahead. He was a little weirded out by her lip in the photo even though he knew this was “supposed” to be manageable. We received an update from Ladybugsnlove.com in September. Our daughter was in foster care and her lip had been repaired. What a surprise. We later found out that Love without Boundaries did the repair. We are so grateful.

referral picture

I traveled to China with my dad and sister and an amazing group of people. My husband wanted to stay with our boys because he felt uncomfortable leaving them for so long. What a wonderful journey it was. I loved our trip and the country. I brought home the best souvenir a family could have asked for… little Mei Mei (Naomi).

The moment she was placed in my arms, I was so happy and she was so sad

Our daughter has been home with us for a couple of months. We have seen the gastroenterologist/hepatologist for her Hep B. We will go back in 6 months so they can check her levels again. So far the doctor thinks she is a classic case and probably won’t need any treatment for a very very long time. We had an appointment with the cleft team they say her lip looks good and she does not have a cleft palate. Good news!!! She will need her gum line repaired as well as a nose and lip revision when she is around 5 or 6.

just being cute

Our daughter is an absolute joy. Her brothers adore her as she does them. Last night as my husband laid Naomi in her bed he told her he loved her and she made his dreams of having a daughter come true. Sometimes my husband and I just look at her and know she is clearly our little girl. She makes everyone laugh. I am constantly amazed by her, she is beautiful inside and out. God truly gave us the perfect little girl. I am in Love all over again. I can’t explain how much this little girl has brought to our family, so much love and joy and a little chaos too. And it has been so fun to have a little pink in our house. I would do this all over again in a heart beat.

Our blog is Finally a Family of Five, please stop by.

Lydia Mei

February 8, 2009 by nohandsbutours 0 Comments

By Andrea, mom to Lydia Mei from China with a SN of unilateral microtia/aural atresia

We began our adoption journey in hopes of adding children to our home, but ultimately we found a much greater purpose and passion. The road to parenthood by way of China brought us into a deeper understanding of how we were adopted by God as His forever family. It also created in us a desire to encourage others to “care for widows and orphans in their distress.(James 1:27)

In June 2005, my husband and I stood in a Chinese office building as our healthy baby girl was placed in our arms. We had waited for this moment for 11 years and could not believe how blessed we were to have experienced this miracle of adoption. A year later, our dossier was headed back to China in hopes of adding a second child to our family.

Over the next two years, the wait for a referral from China increased dramatically. A yearlong military deployment and two household moves kept us from changing our course. We took a wait and see attitude while continuing to explore other adoption programs that we could pursue concurrently or in place of China. In doing so, we found our hearts opening to many different children.

Although we’d written it off for many years, we finally began investigating China’s Waiting Child (WC) program. We still had reservations when we submitted our application after two years on the non-special needs list. I don’t have a nursing bone in my body and faint at the sight of blood, so I figured there was no way I could adequately care for a special needs child. For me personally, I had to have very clear reasons for choosing to adopt a child with special needs.

When we switched to the WC program (June 2008), we were concerned that it would be impossible to discern who our child should be. When we adopted our first daughter, China had done the matching. We felt this was a very “divine” way to choose a child since it was out of our hands and therefore entirely in God’s hands. The WC program required us to choose a child. We didn’t want our fears and anxieties to influence this lifelong decision. Thankfully, we have a sovereign God that brought our child to us at just the right time despite our concerns.

A month later, in the quiet of the early morning, the call came from our agency. Side by side, my husband and I reviewed the file of an 8-month-old baby girl named Mei Ying waiting in foster care in Jiangxi province. Her special need was listed as unilateral microtia / aural atresia with a possible diagnosis of Hepatitis B. Put simply, she has a “tiny ear” on the right side and lacks an external ear canal opening.

We had first learned about microtia while filling out our agency’s special needs application. Further research online made us confident this was a condition we could readily accept.

Microtia is an incompletely formed ear. The term “micro” means small and “otia” means ear. Hence, when translated literally, “microtia” means small ear. At times a bump of tissue is present in the location where an ear would normally be found. In other cases, the lobule, the lower part of the ear, and the concha, the hollow part of the ear, may be partially formed and the entire upper part of the ear is missing. Although microtia can involve one ear or both ears, 80% of the time only one is affected. (source)

Aural atresia is a birth defect in which there is an absence or incomplete formation of an external ear canal. Both the external and middle ear may be malformed, but the inner ear and auditory nerve are often normal. It can occur in one or both ears. A malformed outer ear is the most common indicator of aural atresia. All atretic ears have abnormal middle-ear anatomy to a greater or lesser degree. (source)

We accepted her file and three months later, we held our daughter Lydia Mei Ying for the first time!


In addition to the regular post-adoption checkups, we met with an audiologist. He looked at the ABRtest results from China we had received with her referral. The way he described it to me in layman’s terms is that her hearing loss in her right ear is about equal to sticking your finger in your ear. Lydia will have a CT scan to show us the structure of her middle and inner ear. She’ll also have a full hearing test. But all of this is just informing us of how her ear developed (or didn’t). There is nothing we need to do or undo for a long time. We were especially glad to learn that she would not need surgery any time soon.

Microtia repair is a surgery that is considered cosmetic by insurance companies and also debated among doctors. Many times, parents choose to wait until the child can be part of the decision process for surgery. It’s easy to do an Internet search on microtia. There is also a Yahoo! group on the subject.


Lydia is in all respects a healthy baby girl. She tested negative for Hepatitis B! She also tested as being completely immune to the disease. Her “uncertain” diagnosis in China may have been caused by an infection at birth or by the vaccination given in China. Our research into Hepatitis B showed us that it’s a very manageable disease that does not put our family members or our community at risk. We would gladly adopt another child with confirmed or “uncertain” diagnosis of Hepatitis B.

At age 14 months, Lydia has learned to crawl and now walks across the room in that adorable baby Frankenstein way. The occupational and physical therapists are both impressed at how quickly she is catching up. She is very active and curious to the new world we’ve given her. Everyone agrees that in 3-6 months, she won’t have any developmental delays!


We may still have issues with speech development in the future, but for now, she is plenty vocal for her age. She has names for each family member and loves music. The audiologist assured me that she is not deaf and that she can “hear a truck coming.” I mentioned to him that she can also hear a bottle being shaken from across the room!


Lydia’s intense desire to bond and grow amazes me. When I look at our child, I don’t see a deformity. I see our daughter who has a forever family and a future! More importantly, God sees an intricate part of His creation that He made. (Psalm 139:13-15; Exodus 4:11)

If you are considering adoption of a special needs child, remember that it is not their diagnosis that defines them. It is God who made them and their special need is no secret to Him.

Lydia has only been home for three months and we have no guarantee of what lies ahead for her. Even our oldest daughter, adopted from China’s regular track, could have medical needs arise in the future. Any adoption has risks just as pregnancy does. However, we proceed forward trusting in God’s strength to equip us as their parents.

We have taken a leap of faith with special needs, but now seeing the child God planned to be ours, I wonder if He only wanted a bunny hop from us. Yet, we had to be willing to jump all the way. Although I sometimes have worries, I can honestly say that I am so confident in the God who sustains me. Parenting and adoption are ways that we can glorify God because we know for certain there is no way we can do it on our own strength. We were invited to experience the adoption road with all its potholes and unexpected turns. It was on this road we discovered God’s heart for adoption.

Learn more about our adoption road at our website.

ShuQin

January 31, 2009 by nohandsbutours 0 Comments

By Tamara, mother to ShuQin from China with HepB+

I have three children. My son is a teenager, biological and a great kid who adores his sisters and is their hero. My two girls are adopted from China. They are 8 months apart in age (virtual twins) – the tiny twosome are the same height, almost the same weight and a bundle of energy. They have brought us more joy than I have words to express. My husband and I wanted more children and chose adoption over pregnancy. We did not particularly want an infant and were foster to adopt parents in our state for several years hoping to adopt a little girl that needed parents. That program did not work out for us for many reasons and as those doors closed the doors to international adoption opened at every turn and it became obvious this was our road to travel and that road lead directly to China. Our first daughter came home at 10 months of age as a NSN child. This adoption was such a perfect experience and Ming so special we knew we wanted to adopt a second daughter from China, an older child…a SN child …..in a few years….after we saved some money…and Ming was older, no more diapers, our son started college…we had more time – yada, yada, yada…but you know what they say about the “best layed plans”.

I am a nurse and worked for several years for the Aids/HIV Foundation. Many of my clients were co-infected with HBV and I had great exposure to people living life with these viruses and good up to date medical information. I knew that HBV was very manageable, did not require extensive doctors visits, surgeries, hospitalizations and only very minor, if any, adjustments to daily living. My son learned early not to touch anybody else’s blood, the dangers of uprotected sex and not to share a toothbrush, razor or get a tattoo….but he is vaccinated and protected against HBV, we all are…. That information is to protect him from infectious diseases that do not have a vaccine and the nurse coming out in me. They are more common than most people realize or want to realize. Most people come in contact daily with people who carry infectious diseases – they just don’t know it. Disclosure is a personal decision and not legally required.

HBV cannot be transmitted except by direct blood to blood transfer…not by casual touch, hugging, kissing, salvia, body waste nor by sharing food or beverages with an infected person or bathing, swimming or playing with an infected person…. or by sex IF you are vaccinated. We knew that a small percentage of children can have complications and require treatment, the majority do not and live very normal lives with only routine bloodwork and monitoring of the liver. No child comes with a warranty, even driving to the 7-11 has risk. So, all our homework done, we decided when the time came an older child with HBV would be the SN we were most comfortable with and our first choice.

My mom and I not only share this relationship we are also friends. She traveled to China with us for our first daughter and shared the entire adoption journey. Mom belongs to a few China adoption related Yahoo groups. We had been home a little over a year with Ming when mom was online and a gal she “knew:” posted information on children for whom she was advocating. She passed the post by and then “feeling the need” went back and told this gal if she ever had knowledge of girls with HBV to let her know. A few minutes later she received an email with ShuQin’s picture and medical information (things were different in 2008). Her medical information from China stated that she had tested positive for HBV 3 times, she had no other special needs. My mom recognized her newest grandaughter immediately and called me at work to say she was sending me a picture and some information. I called my husband (he swears I called the agency first and him later) then the agency. We called our pediatrician and emailed the Chinese medicals but we did not see any need to pursue additional doctors opinions. He called back quickly, she had HBV, there were no additional red flags. She was ours by the next morning, the agency fee and letter of intent were in the mail. The paperchase was on – again!!!

We picked up ShuQin January 14th of 2008 in the middle of the worst snow storm China has had in over 50 years. Quite a change for this Florida living native!! ShuQin was 21 months old, Ming was now 29 months old (home with grandma and gege). ShuQin cried for two solid days while we were mainly held captive in our hotel room. She grieved long, hard and loud!! She tolerated daddy while mama was less than chopped liver and was good for nothing but handing out M&Ms. A bath was out of the question! Emotional and physical exhaustion put her to sleep. I knew I had lost my mind! When we arrived home (my sanity intact) we took her to the pediatrician to check her overall health and to have the HBV blood tests done. We wanted the results before we saw the gastroentorologist so we knew where we stood. She tested negative. He wanted her tested again in 6 months. She tested negative once again. Her tests showed that she had been exposed to the virus but at some point between the Chinese tests and the test here in the US she serocoverted on her own without medical intervention. Her body fought the virus and won!! I understand this happens to less than 5% (I have read less than 2%) of infants and young children – but it does happen. We will have her tested in one year to check her antibodies. She is our miracle, and truly a gift above all we asked.


Today, one year later we are blessed far beyond our expectations. ShuQin is child full of joy, laughter and love and we seldom see her “spicy girl” persona. She has bonded and attached without any problems. She and Ming are truly sisters in every way and keep their devoted brother on his toes – along with the cat who has picked up considerable speed this last year….she is also a “mommy’s girl” and a Mickey Mouse devotee. So, is our family complete? I keep thinking of that older, SN, HBV child….in a few years…after we save some money..when the girls are older and we have more time, our son starts college…yada, yada, yada…but you know what they say about the “best layed plans”.

Fei Yan

December 10, 2008 by nohandsbutours 0 Comments

By anonymous, mom to Fei Yan from China with a heart defect (VSD) and Hep B+

When we began the adoption process we were pursuing a healthy child. God had other plans and soon opened our hearts to the children on the waiting child list. We filled out a form with our agency in April 2007 and were expected to receive a referral in six to eight months. During this time we were researching some of the needs that we were open to. I often had dreams of receiving a little girl with a heart defect. As I researched I came across Hep B+ and talked to our doctor and felt very comfortable with this need and called our agency to add this to our list. We waited for one year before the call would come on April 15, 2008 our lives were changed forever. Our agency called and said they had a little girl that was 10 months old and had two conditions Heart Defect (VSD) and Hep B+. I knew before I even looked at her file and photo that this was our daughter. We consulted our doctors and on the same day we accepted the referral.


We traveled in August to bring our daughter home and was seen at the Cardiologist two weeks and had a ultrasound of her heart. Her (VSD) hole in her heart has almost closed all the way and there will be no surgery. We will have follow-ups for every six months until age five. She did test positive for HepB+ and will be tested every six months. If you look at her there is no signs of this need and she may never show symptoms. Our doctor says that he thinks that there will be a cure someday and he has never had a child die from this. Our doctor made us feel so comfortable with this need that I would adopt another child with HepB+. I still think about what if we hadn’t researched and added HepB+ we would not have this little girl that fills our house with joy and laughter.

Maya

November 19, 2008 by nohandsbutours 0 Comments

by Eileen, mom to Maya from China who is HepB+

May 23, 2006 was a landmark day for our family. The day started with a phone call from our adoption agency. They told us that the night before they had e-mailed us the file of a special needs child and they wondered if we’d had a chance to see it. We couldn’t hang up fast enough to get to our computer! It was early in the morning and our 3 children were still asleep when my husband and I excitedly logged onto our e-mail. My hands felt clammy and my heart was racing. As first-time adoptive parents, I had always wondered how our adoption story would play out and now this was it. We read through this baby girl’s file, stifling tears as went, savoring each piece of information. So this is the new birthday that will be celebrated in our home every year, this is the Chinese name that I may not know how to pronounce now but will soon be ingrained in my heart, THIS is our daughter’s story! Everything about that morning felt so historic.


I wanted to sneak up on her pictures, kind of casually take her in starting with the tip of her head and then I could work my way down, stopping to process each bit of information. Somehow I scrolled too fast and suddenly there she was–a round-faced, healthy-looking 6 month old, sitting in a walker, jauntily kicking up one little bare foot into the air. She literally took our breath away. It was like looking into the face of a long-lost friend; she felt that familiar. And truth be told, from my biased perspective, she was and is simply stunning. She could be a poster child for non-special needs China adoption. Her face and body were completely whole and perfect, her coloring was healthy, she was developmentally on-target, her weight was right where it should be, and there was absolutely nothing about her that anyone, even a doctor, would point to and say, “special need”. Her special need is found only when you look at the results of her blood test. It’s a special need that she shares with upwards of 1 out of every 5 people in China. She’s positive for the Hepatitis B virus.

Hepatitis B is a virus which lives in the host’s liver cells. Our daughter, Maya, most likely got the virus from her birthmother. It’s also possible that she got the virus from a re-used needle in the orphanage. Considering the predominance of the virus in her birth province of Guangxi, it’s most likely that the virus had been passed from generation to generation in her birth family. A recent study in Guangxi found that 76.9% of those tested showed evidence of either past or current Hep B infection. Interestingly, they found that among children the boys were more likely to have Hepatitis B than the girls. The theory of the researchers was that mothers are more likely to take their boys to the doctor where they may be given unclean injections. Sometimes people mistakenly think that only a promiscuous lifestyle or IV drug use lead to Hep B infection. While it’s true that those lifestyle choices put someone at high risk, the virus is so common in China that absolutely no assumptions can be made about the lifestyle of someone with Hepatitis B. It’s highly probable that Maya’s birthmother never knew she was infecting her baby because she may not have known she had it herself.

Children who contract Hepatitis B at birth have a 95% chance of chronically having the virus for the rest of their lives. An adult, on the other hand, who contracts the virus has a 95% chance of clearing the virus within 6 months. The maturity of the host’s immune system accounts for the imbalance. A baby’s immune system does not see the virus as a foreign threat, whereas an adult’s mature immune system quickly recognizes the invasion and launches an all-out immune attack. Once someone has cleared the virus, or seroconverted, their body forms antibodies to protect itself from further infection. Some adults who have these acute (less than 6 months) infections become quite ill when they’re clearing the virus and others never know anything is wrong and only find out at some later date that they show evidence of a cleared Hep B infection. My father-in-law contracted Hep B from a needle stick while performing oral surgery on a patient some 40 years ago, before there was a Hep B immunization. Like most other adults, he quickly cleared the virus and has suffered no ill effects. He can’t donate blood, but other than that, it hasn’t impacted his life.

Most kids with chronic Hep B are in the “immune tolerant stage” when their bodies are ignoring the virus. They are “tolerating” the virus. The virus is there and replicating without any resistance since their immune system isn’t fighting it. Usually they have extremely high viral loads that make it difficult to ever clear the virus even when their body does recognize it and start to fight it. The presence of the virus is most likely inflaming their liver, but serious damage is usually not happening during childhood.

Although fighting the virus can be a good thing (as it is in an acute infection), since the virus is located in the liver cells, when the immune system attacks the virus it is also attacking and killing liver cells. A certain degree of liver cell death happens in everyone, but when the liver is under constant attack, it can scar (fibrosis, and in severe cases cirrhosis) and it will be constantly be making new cells to replace the ones that are being destroyed. With all of this dying and regenerating of liver cells there is more of an opportunity for malignant cells to form leading to liver cancer. Liver cell death is measured by blood test and when a person’s liver enzyme levels are more than twice the upper limit of normal, it shows that they are actively recognizing and trying to clear the virus. This is known as the “immune clearance stage”.

As I said though, most kids are in the immune tolerant stage. For these kids, usually they are monitored with bloodwork every 6 months and see the doctor maybe even just once a year. They go to a pediatric gastroenterologist or possibly an infectious disease doctor. Generally they are also getting a liver ultrasound every year or maybe every other year. There really isn’t anything that needs to be done on a day to day basis. They really can live a completely normal childhood.

If a child is actively fighting the virus and sustaining liver damage (which can be confirmed by biopsy) there are a few treatment options. Interferon is a drug that is injected weekly (either once or three times a week depending on the type of interferon) and it stimulates an immune response. Its purpose is to strengthen the fight against the virus that the host’s immune system has already started. Sometimes the side effects of interferon can be difficult to deal with, and the parents are the ones giving the injections, so that can be trying also. Usually it’s a 9 month to one year treatment time with interferon. The success rates aren’t great, but it offers the best chance there is of completely clearing the virus.

The other treatment option is the antiviral route. These treatments try to slow down viral replication, which in turn would hopefully halt the host’s immune response and stop further liver damage from happening. The antivirals seem to be tolerated well and are easy to administer. They are in pill form. The problem is that Hepatitis B is a survivor virus and it’s whole purpose is replication. When its continued replication is threatened if will often mutate into a resistant form. The mutations are more difficult to treat than the wild-type virus so

it’s possible to end antiviral treatment with a stronger virus than what you started with. Although not common, there are also some great success stories with antivirals, so treatment decisions can be stressful.

There tends to be a natural progression of the virus and most people do get to a stage where the virus stops replicating (usually in adulthood). I’ve read that 75% of people with this virus will live a normal lifespan and die of causes unrelated to their Hep B. It is extremely rare to have someone younger than 40 die of complications from Hep B. I recently spoke with one of the nation’s most highly respected pediatric gastroenterologists. She doesn’t even see kids in the immune tolerant stage; she only sees the difficult cases, often referred from other GI’s. Knowing her level of experience, I asked her how many liver transplants she has done on children with Hep B. She said none. I asked her how many cases of liver cancer she’s diagnosed in children with Hep B. Once again, she said none. Life-threatening complications in the first two decades of life are possible, but very highly unlikely. Healthy lifestyle choices also play into the mix. Alcohol abuse is dangerous for anyone’s liver but it can be deadly for someone with an already compromised liver. There is also some evidence to suggest that men have a harder time with this virus than women. I read one study that said the lifetime chance of a female dying of Hep B related liver disease was 15% and for a male it was 40%.

With Hep B there are some disclosure issues that need to be thought about. Some people are very open about their child’s Hep B and have had positive experiences that way, others have found that there is a great deal of fear regarding Hep B and they’ve decided not to disclose at all. Thankfully there is a Hep B immunization. Anyone living with a Hep B positive individual should have their titres checked to insure immunity. The virus is spread through blood to blood contact and not casual contact, but it’s still important to take reasonable precautions. Home situations are easier than situations out in the community. In the United States the Hep B immunization series is required for school attendance, but some parents opt out of immunizing their children. Most adults have not been immunized. Mei’s doctors have told me that she has no restrictions and can participate in all normal childhood activities. It’s not always easy, but every parent of a child with an infectious disease needs to find a balance between protecting others but also protecting their child’s privacy.

In our personal experience, Maya is a delight in every way. She adjusted to our family so quickly and easily. She is very verbal, smart as a whip, coordinated, strong, funny, and just an all-around great kid. I can’t say that there haven’t been moments of stress with her Hep B, but overall it has been an extremely easy special need. Maya is not the typical case and came home at 11 months already in the immune clearance stage. I hoped and prayed that she would be one of the lucky few to clear the virus on her own. After nearly 2 years at home, and despite her immune system’s fight, she still has a viral load in the billions. She’s scheduled for her first liver biopsy this month and we’ll make decisions based on what they find. Even when her liver enzyme numbers were at their worst, she felt great. There really are no symptoms in these children. It’s called the “silent” disease because a person can literally have it for decades without even a hint that anything is wrong.

It seems that people who share opinions on Hep B often either scare families into believing that it’s a death sentence for their children or they describe it as some itty bitty bug that’s no more of a handicap than wearing glasses. I feel frustrated with both of these camps. The odds truly are with these children that they will live long healthy lives, but I also respect the seriousness of the virus. Liver cancer is the most common cancer in China and it’s because of the predominance of Hep B.

At nearly 3 years old, Maya is living a wonderful life. She does know that she gets blood tests more often than her siblings, but she is happy and healthy and thriving. Her possibilities for the future are limitless. In China that would not have been the case. If her orphan status wasn’t already enough to put a cramp on her future, her Hep B status was an even bigger blow. One would think that with such a huge percentage of the population positive for this virus, that there would be a great deal of acceptance. That is absolutely not the case. Some provinces require a clean blood test even before a child enters elementary school. Just a few years ago, a man committed suicide on the steps of a government building in Beijing. In his hand was a letter stating how his life had been ruined after he tested positive for Hep B. He lost his job, his family, and his hope for the future. China is trying to make the lives of those with Hep B better, but the wheels are turning slowly and the stigma is strong. I am so thankful that Maya is not stigmatized by her Hep B and that she can live a normal life.

Since there is an effective immunization, Maya can marry someday and her husband can be protected from the virus. Her Hep. B shouldn’t keep her from having normal pregnancies and her babies have an excellent chance of being free from the virus if they receive a series of injections right after birth. She can enjoy all that life offers.

I was recently at the grocery store with Maya, and as usual, she was being her charming little self. She was chatting away with an elderly woman who was behind us in line and the woman leaned toward me and whispered, “How did you ever get so lucky to be this little girl’s mommy?” I agreed wholeheartedly with her that we are indeed incredibly lucky. I also thought that this woman would be surprised to know that there were not crowds of people waiting to adopt Maya. Agencies often have a difficult time finding families for their Hep B kids and so many of their files have been returned to CCAA. What a tragedy for the children. What a loss for the families.

I sincerely hope that in the near future there will be advances in the treatment and management of Hep B. Research into Hep C and HIV may produce medications that also are effective with Hep B. Last year I attended a Hepatitis B conference held in Philadelphia. We toured the research facility of the Hepatitis B Foundation and I fervently thanked a doctor who was working there alone in his lab doing Hep B research on a beautiful Sunday morning. There are people who are passionate about finding a cure and I pray that someday they will be successful.

I would adopt another Hep B child again. I feel confident that the odds are with my daughter and that with consistent monitoring we can keep her healthy. I’ll never forget that wonderful morning when I saw Maya’s picture for the first time. We knew her and loved her instantly. The virus that she carries is not her in any way. She is her own perfectly made spirit and we thank our Heavenly Father daily that she is a part of our family.

Feel free to visit our family blog here.
Or contact us at beckbunch@embarqmail.com.

Grace

October 20, 2008 by nohandsbutours 0 Comments

by Lisa, mom to Grace from China who is HepB+


My goodness. Where to begin. My husband and I were perfectly content with our life and the way our average sized family filled out our average sized home and average sized vehicle….life was sort of just bouncing along and then, there in my contented state, my lulled, rather stagnant state, I began to hear the voice of God whispering to my heart…niggling away at my content and making me question.

My good friend had adopted from China recently and after hearing about the plight of so many orphans in the world, I wondered how I could sit here, in my comfy house, in my comfy life, and ignore what was going on with all these little children. It was hard for me to discern whether God just wanted to pull me out of my bubble and open up my eyes to the needs of His children, or if He was actually pulling me all the way to an orphanage in China to bring one of those children home to be my child. Eventually, both my husband and I became convinced that God had a daughter for us in China. But which one? I felt that He was especially pulling my heart to the little ones with special needs.

I am not a person comfortable or familiar with special needs. I generally am a scaredy-cat and like things to be tidy, and neat, and clean and pretty. I don’t venture too far out of my comfort zone too often. But the idea that so many people would be drawn to the healthy, tiny babies, leaving so many sweet ones overlooked because of supposed imperfections or illnesses absolutely broke my heart. I thought about how it must feel for the older children to see the babies leave time and again, while they remained. I thought about how each time they got gussied up to take a picture, how they must have wondered about the families that would see that picture and hoped for just one to choose them. I thought about my own three, healthy biological kids and how God had blessed our family with so much. We had an abundance of everything in comparison to these special needs orphans, and because of my husband’s military service, we would have health care to cover whatever medical needs they would have. It was never a question for me or for John whether we would go the special needs route…we knew that without a doubt, we would. And I must confess that I felt a certain comfort in getting to see the children’s file and put a face to the file’s information. John felt at the time that he would recognize his daughter when he saw her, and as it turned out, that is how it happened. I had shown him many little children’s files and he would always say, “Nope. She’s beautiful. Looks sweet. But she’s not our daughter.” I don’t know how he had that assurance. I could have brought so many different children home…but when he saw Gracie’s picture, he knew. He just said, “That’s her. That’s our baby.” Maybe that seems ridiculous or shallow to some people, but to John, he had to feel that connection. Hear that assurance from God that this was his daughter.

Gracie’s special need was Hepatitis B. This was something that we felt entirely comfortable with. We had marked on our agency’s special needs checklist what we considered pretty minor special needs. My girlfriend teases me that we were only interested in the “invisible special needs”, or the ones that would be easily corrected. The thing I am learning is that what is “invisible” or “easily corrected” is all relative. Cleft Lip and Palate seemed far too complicated for our family…hearing or vision impairment implied to us that the child would need stability and a military family is anything but stable…we are constantly on the move….so I wrote down that we were open to needs like “Missing fingers or toes”, “heart defects”, “Hepatitis B”, birthmarks…things that most Americans wouldn’t even consider special needs. Once we delved into the process, I started to realize that the very needs that I felt were too complicated didn’t frighten other families at all, although a child would hepatitis B was really a scary prospect for them. It’s amazing to me the way God pulls us each to our child so perfectly.

Since we’ve come home, we’ve discovered that Gracie’s special needs didn’t stop at Hep B. In fact, of all her issues, Hep B has affected our life the least. We visit her Pediatric Hepatologist twice a year for tests to monitor her liver health, but she is healthy, healthy, healthy now. He feels confident that eventually, kids like Grace will be able to be treated successfully and clear the virus. Only one in four kids with her condition actually ever require treatment, so we’re hoping that she is one of the three that don’t. Many parents are very secretive about Hep B and not sharing their child’s condition with anyone…we’ve never felt comfortable with that kind of secrecy. I felt that the very reason there was so much fear associated with Hep B was due to misinformation and people not being willing to share about the condition. We’ve never been met with any sort of hostility or isolation toward Gracie or our family and everyone in our community has been incredibly supportive and the compassion and love poured out on Gracie so abundant. We always share with her caregivers, schools, our church, or friends who have close contact with Gracie about her Hep B status and it has really been a non-issue for us. Because so many people are vaccinated against it, no one is in real danger of contracting it, but we’ve felt that it was only kind to inform people so that they would take that extra step to use the universal precautions that all of us should be using anyway. We have found that educating others about Hep B has taken fear out of the equation and if anything, raised awareness about the need for a cure.

Doctors discovered in the tests that followed her arrival home that Gracie also has a couple blood disorders that she probably inherited from her mother…G6PD Deficiency and a Platelet disorder that makes it hard for her blood to clot. Neither of them is serious, but they can be inconvenient since it means she has frequent nose bleeds and we have to be careful about what medications she takes. She also has to wear braces on her feet, and that might last a long, long time. She’s in speech therapy, and that will probably not last that long at all. I have to say that by the time we found out about these different issues, we were so in love with Grace that none of them mattered to us, and even if we had known about them, we would never have hesitated to adopt her. Any child we would be blessed to raise comes with a whole host of unknowns…they may be healthy today, but what about tomorrow? They each have their own little list of surprises. And Gracie’s sweet, loving, and hilarious personality has added so much joy and life to our home…we cannot imagine life without her.

I hope that our story will only encourage others to pursue special needs adoption. We don’t see Gracie as our daughter with special needs or our daughter from China or our adopted daughter. She is simply our Grace, whom we love more than we can say.