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Worth It: Adopting a Child with CAH

December 2, 2016 by nohandsbutours 2 Comments

When my husband and I first reviewed our daughter’s file, our first thoughts were of disbelief. Here was a perfect, healthy, beautiful eight-year-old who had been waiting for several years on the Shared List. It seemed unbelievable that no one had snatched her up. After all, the special needs listed in her file didn’t seem like that big of a deal: urogenital malformation, absent uterus and ovaries.

We accepted without hesitation, even though the medical information in her file was practically nil. There was a sentence or two describing her ambiguous genitalia, the results of a chromosomal karyotype indicating 46XX, and a fuzzy, unreadable copy of an ultrasound, both done around three years of age. There were no pictures of her genitalia included, and for that I am grateful. Although it would have saved us from several surprises when we arrived home, I personally believe the benefits to us as parents would have been outweighed by the lack of privacy as various families reviewed her file and declined, not to mention the emotional trauma it could have caused her to have adults photographing her.

The ambiguous genitalia didn’t bother us — my husband and I are of the belief that one’s genitals aren’t the defining characteristic of a person’s gender identity, and we both felt educated and prepared to parent a child who may or may not agree with her assigned gender.

Although we were scared of the possibility, we were also willing to step up and help our child transition if it turned out that our daughter was actually our son. The hardest part for me emotionally at that time was her lack of fertility — it seemed so unfair that she would never know anyone who was biologically related to her. My husband, ever the calming presence in our marriage, reminded me that families are built on love, not biology. “Besides,” he said pragmatically, “she may not even want children. We should just be grateful that she’s healthy.”

Several months went by. We received an update, including new measurements which indicated that our daughter was growing quite quickly. All of her records indicated that from birth and up until around five years old, she had remained solidly in the 50th percentile for height, but around age six her height had suddenly shot up to the 95th percentile. We had dismissed the previous measurement in her file as inaccurate — we had heard Chinese measurements often were — until we received this update and realized she was still at the 95th percentile for height.

I began to worry.

Was she actually older than her file stated?
Was this a mistake, were these the measurements for a different child?
Did she have some sort of pituitary tumor?

I obsessively researched and kept running into the same term: Congenital Adrenal Hyperplasia, or CAH. It is an endocrine disorder that affects the adrenal glands’ (located on top of each kidney) ability to produce cortisol, a hormone that regulates the body’s response to stress. I learned that this lack of cortisol production results in the overproduction of androgens. Both males and females produce androgens, but they are found in higher levels in males. CAH can cause masculinization of females in the uterus and is the most common cause of ambiguous genitalia in females. Most tellingly in our daughter’s case, CAH can cause very rapid physical growth in undertreated or untreated individuals.

However, this didn’t make sense to me — CAH typically results in death in infancy if children are undiagnosed, because illness, such as diarrhea, fever, or vomiting, causes adrenal crisis. The CARES Foundation’s website explains that “[p]eople who do not have adrenal insufficiencies naturally produce up to ten times the normal amount of cortisol, which is vital to the maintenance of blood pressure and heart muscle tone, as well as sugar and salt balance, during times of physical stress. When illness or injury occurs in adrenally insufficient individuals, however, an immediate additional dose of glucocorticoids (hydrocortisone) is necessary to avert adrenal crisis. Delay in administration of these medications can lead to shock, heart failure and death.”

Reading that had me convinced that our daughter couldn’t have CAH and have survived for so long without treatment. Besides, although CAH can affect genital development, causing clitormegaly and/or absent or shallow vaginal canals, there was no research connecting it to lack of internal reproductive organs. That’s what I thought, until I read a random post on the Facebook group for special needs adoption from China. It mentioned the different kinds of CAH, including the term “simple virilizers.” Fascinated, I began more research and learned that my understanding of this disorder only included the most common, most severe type: salt-wasting 21-hydroxylase deficiency (21-OHD). As I had thought, this form of CAH typically results in death in infancy if untreated. However, there were also different severities of 21-OHD, including simple virilizing CAH and late onset CAH, as well as the rarer forms of 3Beta-hydroxysteroid dehydrogenase deficiency (3B-HSD), 11-Beta hydroxylase deficiency (11B-HD) and 17-alpha hydroxylase deficiency (17a-HD).

Armed with this new knowledge my husband and I sent our daughter’s medical records to an international adoption doctor. (We hadn’t previously done this because we assumed that her file was so sparse that the information we would receive would be minimal. I’ve learned my lesson now and would encourage other prospective parents to have their children’s file reviewed by a physician who is knowledgeable regarding international adoption in general and China adoption in particular.)

When I shared my concerns about CAH, she agreed that it looked like our daughter would likely be diagnosed with this upon arrival in the United States. She went on to educate me about the disorder, including the fact that most individuals with CAH do not consider themselves to have a disorder of sexual development (DSD), or to be any less female than their non-CAH counterparts. Then she gave me the best piece of news yet: “About her ultrasound. It was done so early, her uterus and ovaries would have been tiny. It is very likely that they could have been overlooked, especially if the technician was not very well trained in what to look for.”

Immediately my discussion with my husband several months before came to mind. In the space of the phone call with this doctor, we had gone from having a healthy but infertile daughter to a daughter who would likely be able to bear children but also had a chronic, potentially life-threatening disorder. I couldn’t help but laugh at the irony of it. But here’s what I know as truth — I knew it instinctively then just as well as I know it now — it is extremely likely that we would have said no to our daughter’s file if it had included a diagnosis of CAH.

We were ignorant of what congenital adrenal hyperplasia was. We were scared of how a chronic illness would affect us and change our lives. In our naïve, pre-adoption state, we had felt prepared for social issues regarding gender — definitely not for medical specialists and multiple doctors and potential surgeries and lifelong daily medications and carrying an emergency injection around with us everywhere we went!

Once we met our daughter in China, I thanked God that we had not let fear or ignorance get in the way of joining her to our family. She was wonderful and clever and strong-willed and brave.

We visited our pediatrician shortly after arriving home. She is a lovely, intelligent woman, but she has very little experience with CAH. Because of this, as well as the fact that our daughter appears quite healthy, she did not want to give us the emergency referral to a pediatric endocrinologist that I requested. “Emergency referrals are for things like diabetes,” she told me. “Things that could be life-threatening.”

This is where having a group of CAH warrior mamas in my corner came in handy for the first time.

Although I do not like confrontation, especially with people in positions of authority, I held my ground and spoke with conviction. I knew beyond a shadow of a doubt that my child had CAH and needed a diagnosis and medication. Although it didn’t appear to be an emergency now, as soon as she got sick it would become a life-or-death emergency. My voice shook, but I educated her as best I could and refused to take no for an answer. My daughter’s health was at stake. Thankfully, the doctor was open to hearing me, and we ended up with an appointment with the pediatric endocrinologist less than a week later.

Our first visit with the pediatric endocrinologist, Dr. M., was hard, as my daughter still did not trust me very much. She also engaged in what I was coming to learn was a nervous coping mechanism: hyperactivity, refusal to speak to anyone or be still for longer than a few seconds, and giggling excessively. Dr. M. ordered lab work, but he expressed confidence that it would come back with a diagnosis of CAH. The physical exam he performed was also the first time I saw my daughter unclothed. Years of excess androgen production had caused her genitals to be much more virilized than described in her file, she already had pubic hair, and she didn’t have any vaginal opening at all. To say I was shocked would be an understatement. How could China have missed this? None of it was mentioned at all, despite its obviousness. Again, my husband was the voice of reason. “She won’t need surgery right away, and she might choose not to have any at all. This gives us time to bond and to learn who she is. Besides, it’s still not clear if she thinks of herself as a boy or a girl.”

He was right, of course, and his words calmed me. It was true that our daughter was quite androgynous. I do not attribute this to CAH; rather, I think it is just who she is. She looks, dresses, and acts in a manner that makes it impossible to easily tell if she is a boy or girl. She refuses to let her hair grow out or wear dresses, and is just as comfortable wearing a shirt with a motorcycle or one with glitter. She identifies as a girl to the extent that it matters at 8 years old: she calls herself a girl and uses the girls’ restroom. But was this because she had always been told she was female, or was it her true gender identity? Our brand new relationship and the language barrier made it hard to discuss, so we just didn’t know with certainty. But we did know this: it didn’t matter one bit to us. She is our child, and in my opinion her androgyny just adds to her charm.

Not long after the visit to the endocrinologist, which did result in a diagnosis of simple-virilizing CAH, she and I sat down with a book that should be mandatory reading for any parent of a child with this condition: Congenital Adrenal Hyperplasia: A Parents’ Guide, by C.Y. Hsu and Scott A. Rivkees.

We looked at some drawings showing the Prader Scale and talked about how some girls’ bodies look like this and others look like that. I also told her, in the most basic English I could manage, along with lots of eye contact and A-okay hand symbols, “You girl, jie jie (older sister), okay. Mommy loves you. Daddy loves you. You boy, ge ge (older brother), okay. Mommy loves you. Daddy loves you.”

As scary as that conversation was to have as a parent, especially with a child who hardly spoke my language and barely knew me, it opened the doors for increased trust and bonding. She shared that she is a girl, but it does not bother her if people think she is a boy. Amazingly, my fears about her small, private, Christian school classmates were unfounded. None of them have had any issues with her androgynous appearance and everyone, students and adults alike, have accepted and befriended her with ease. But then again, she is so confident and charismatic that how could they not?

Not long after, we visited Dr. M again and had another ultrasound conducted. Once again, the technician could not find any evidence that our daughter had a uterus or ovaries. Our second visit to Dr. M. is also when I, once again, was reminded of the value of educating yourself on your child’s medical condition, creating a village for yourself with other parents who have walked similar paths, and advocating for your child.

Although I am sure this doctor meant well, there were several instances where he dismissed my concerns. For instance, our daughter’s renin level was elevated. This indicated that she was losing salt in her urine, which typically requires treatment with a medication called Florinef. Dr. M. disagreed that she needed it, saying that if she were a salt-waster, she would not be alive.

This was in contradiction to my own research and the information being given to me by my fellow CAH warrior mamas, and my husband and I made the decision to change endocrinologists. We decided to travel three hours from our home to visit Dr. A., a pediatric endocrinologist who specializes in working with children who have disorders of sexual development. In fact, she had recently opened up a clinic for children and adolescents who had DSDs or were transgender.

Immediately we felt a sense of comfort with and trust in her level of experience that we had not felt with the previous endocrinologist, despite his kindness. Dr. A. listened to my concerns, including worry about my daughter’s renin levels, but more importantly she listened to my child.

And then she gave us the news that floored me: “Her anti-mullerian hormone levels, while lower than typically expected for a girl her age, are higher than we’d expect if she didn’t have ovaries. It is very likely that she has them. These levels, combined with her pubic hair, developing breast buds, and acne, indicate that she is probably close to starting puberty. We’ll need to either consider medication to prevent puberty if she is unsure of her gender identity, or prepare for surgery to create a vaginal opening for her sooner rather than later so that she can menstruate.”

With that, we were back to where we had been months earlier. With every answer we had received, we were left with three more questions. Although my daughter shared that she didn’t want breasts like Mom, she didn’t have the English to explain whether it was because she wanted to be a boy or because she didn’t want to be different from her classmates.

We currently have an appointment with the endocrinologist and a pediatric urologist, where we hopefully will get some more answers.


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Here is the final thing I know as fact, though: Whatever the future holds for my child, whether she remains a girl or asks to transition to a boy, whether she is infertile or not, whether she wants children or not, regardless of all of it — she is worth it. She is worth all the confusion, all the questions, all the medical appointments, all of it.

She is precious, amazing, and perfect, and we couldn’t be more proud to be the ones walking along this journey with her.

– guest post by an anonymous mama; image by Tish Goff

Urgent Aging Out Child: Margaret

December 2, 2016 by nohandsbutours 0 Comments

Margaret ages out in 61 days, please share this post so her time does not run out!


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Margaret was born February of 2003 and is described as an outgoing and caring girl, who loves to communicate with others. Her language development is good and she can properly express her ideas. She is diagnosed with nystagmus and postoperative cataracts, but she does have some remaining vision. She can see larger objects both near and far away as long as it isn’t too dim. She is attending a school for visually impaired students and is learning braille. Her overall performance in school is excellent, and she participates in all kinds of social activities. Her favorite activities include listening to music, doing crafts and playing with her friends. Margaret is very musically gifted, she has received professional vocal training and has passed the level six proficiency test of the academy of music! WACAP has a video of her reciting and singing, ask to see her file to hear her beautiful voice!


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Margaret’s file is currently on the SHARED LIST so she can be pursued by a family or single woman working with any agency. She has a $4,000 grant available for qualified families if they use WACAP. For more information, please email WACAP as soon as possible, her adoption will be a race to complete.

Reach for the Stars: Adopting a Child with Vision Impairment

December 1, 2016 by nohandsbutours 0 Comments

It was the second time in his life to ride on an airplane. The first time was only ten months ago when he traveled the 16 hour flight from China to America. On that first flight he was a scared, angry little fighter whose only concern was protecting himself. Now he was a happy, calm and serious little boy.

“Do you know another thing I want to be when I grow up, mama?” he asked. “I want to be a pilot!”

My son Henry is a little boy who loves spaghetti, swimming and going to school. He drives a little motorized car around our neighborhood and he can ride a scooter as good as any other seven year old. He wants to be both a fireman and a policeman when he grows up. And he is determined to drive a monster truck with huge tires.

Henry is legally blind.


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When we made the decision to adopt Henry, we were told in his file that he was completely blind. “He can feel light” was the extent of his vision. In the months that we were preparing to go get him from China, we also prepared our hearts to have a child who would never see the world. We researched schools and special learning styles for the blind, we “blind proofed” our house and we sought out other families who had adopted blind children. However, we could not find very many.

It seems as though blindness is one of the least adopted special needs. Obviously, there is something very scary about adopting a child who is blind.

Will they need to go to a special school?
Will they be able to attach and bond without having eye contact?
Will they need to live with us forever?

Since we had no experience parenting a child with vision impairment, these were questions that we left for our faith in God and his plan for our son.

To our surprise, on Gotcha Day (January 18, 2016) we quickly realized our son was not completely blind after all. It didn’t take long to notice that when a ball was rolled his direction, our little Henry would run over, pick it up and throw it back. Although his sight is very limited, it is much more than we ever had expected.


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Henry was born with a rare genetic disease that has caused opaque corneas. Because of the thick, blue layer covering his eyes, very little light is able to get in. To compensate for only having 20/800 vision, the doctors believe that at a young age his eyes developed nystagmus (a condition where his eyes continually shake from side to side).

We have seen many specialists and surgeons over the last ten months and all are amazed at how well he gets around considering his impairment. We attribute that to the fact that he was largely left on his own at the orphanage to navigate life for himself. Without the love of a mother and father for the first six years, he developed amazing life skills to compensate for his lack of vision.

This ability to compensate has been so accurate that we forget he even has a vision impairment! Henry attends public school in a general education class and also receives weekly hour long instruction from a vision impairment specialist. She has taught him to use a magnifier to see his worksheets and books, he has a monocular to see the blackboard and has even started him reading braille. We have all been so amazed at how quickly he learns new things, it is evident he has unlimited potential.


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Recently in the car with my other children, Henry said “Mama, what is your special need?” And you know what? He is right. I have seven children, all ranging in different abilities, and I have realized that we all as human beings have a special need. Some are very obvious, like opaque corneas, but others are invisible like low self esteem. Every one of us has our own special need.


If you are considering a child with the special need of vision impairment, here are some things to consider:

1. Our son is messy. It’s very difficult for him to see the fork to pick up food, so he places his mouth on the edge of the plate and scrapes the food into his mouth like a tractor moving dirt. He prefers to use his fingers over utensils because he can discern what the food is much easier if he can feel it. Food gets everywhere – we have even cleaned mashed potatoes out of his ears!

2. Don’t rearrange your furniture. Henry plays tag through the house with our typical sighted children. He has the layout of all our furniture memorized. I made the mistake of moving a floor lamp to a different location and it didn’t take ten minutes and he had already run into it and knocked it to the ground, the light bulb shattering everywhere. Another thing we have found is that cabinets and drawers need to be shut at all times. The other day someone left the silverware drawer open and he walked right into it, cutting his forehead.

3. He can’t read facial expressions or body language, so bonding and attachment need to be fostered more through touch. I try and hold him as much as possible and stand very close so he can smell/feel my closeness when I talk to him. It’s fascinating, but he still can’t smile for a picture. He simply can’t see what a smile looks like and therefore can’t copy it.

4. He touches everything! It is his way of exploring the world. The problem occurs when he thinks nothing of reaching his hand to the stove to touch what is cooking or putting a hot pepper up to his eye to get a close look.

5. He has extra sharp hearing. He can hear a lawn mower on another street and an airplane before I can see it in the sky. I believe his ability to focus on sounds has helped him learn English much faster than most children. He can also hear when you are trying to say something in secret, so we always have to watch our words!

6. He hasn’t realized yet that there are things he just won’t be able to do because of vision impairment. And we aren’t going to tell him. Every child deserves to dream… and for this little boy, if he wants to be a firefighter, a policeman, or a pilot, we are going to encourage him to reach for the stars.

We have plenty of time to figure out the steps along the journey.


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To offer people a closer look into adopting a child with vision impairment and Down syndrome, we started a YouTube channel called A Real Life Fairy Tale/Audrey Shook, and blog, A Real Life Fairy Tale.

– guest post by Audrey

We Could Have Missed This

November 30, 2016 by nohandsbutours 10 Comments

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November is National Adoption month and a lot of us adoptive parents have been sharing pictures and a bit more about our adoption journey’s on social media. For a few years now, a friend and I have chatted from time to time how we could have missed this. We could of missed the joy, the …Read More

So Much More than His Diagnosis

November 30, 2016 by nohandsbutours 0 Comments

kayla

I could write for days about our journey — our growth, the process, the joy, the tears, the worries, the peace. But for today, I’ll focus a little on the medical aspect of our story because there are so many unknowns, so much research, so much hope…..and knowing you’re not alone in it helps, if …Read More

Find My Family: Austin

November 30, 2016 by nohandsbutours 0 Comments

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Austin is the cutest little six-year-old boy around! Austin can go up and down stairs, go down the slide, and ride the wood horse. He can chase and play with other kids. Austin can use a spoon to eat and a cup to drink water. He can put on and take off his clothes and …Read More

It’s Just Poop. Except It’s Not.

November 29, 2016 by nohandsbutours 4 Comments

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Has this ever happened to you? You’re scrolling through a list of sweet little Chinese faces and suddenly the photo of a completely adorable child jumps right off the screen at you! You read the profile, genuinely intrigued. Then you get to the medical need listed and you think, “I don’t know what that is, …Read More

Coming Home During the Holidays

November 29, 2016 by nohandsbutours 2 Comments

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To the family coming home during the holidays, During the past several months you have longed for and dreamt about those first precious moments when your child would join your family. You’ve dreamt what his hair would feel like and you have imagined kissing his kissable cheeks. And now, your family is plus one in …Read More

Then and Now: Hannah

November 28, 2016 by nohandsbutours 1 Comments

hannah

November is Adoption Awareness Month. And our focus is Then and Now… glimpses into the lives of children – children who were once orphaned – who are now beloved family members. Daughters, sons, sisters and brothers who are now blossoming in the love of a forever family… ……….. On Sunday morning, February 28, we headed …Read More

Saying Yes to a Child with a Terminal Diagnosis

November 28, 2016 by nohandsbutours 3 Comments

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When we felt God’s pull on our hearts to adopt, it was the year 2012 and we had three biological children, ages 11, 8 and 6. We had never thought we would adopt, but God had created a yearning so strong in our hearts that we couldn’t say no. Adoption in and of itself was …Read More

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