Living with HIV: From Medical Professionals

August 22, 2017 0 Comments

As we see more and more HIV+ children become available for international adoption, we thought that it would be beneficial to hear first hand experience on parenting this need. So we asked prospective adoptive parents what they really wanted to know about having a child with HIV; then posed those questions to both adoptive parents and their HIV+ children.

In this third post – in a three-part series – we posed questions to Nurse Practitioners, Infectious Disease Doctors, Pharmacists, and RNs who have experience in working with HIV+ patients.

Part Three: From the Medical Professionals

1. What are the typical side effects of medication?

Abdominal pain, upset stomach, diarrhea, sleep disturbance, low HGB, low ANC.

It really depends upon the medication. Most children do very well with HIV medications with no side effects. However some children have side effects that are usually very manageable or temporary like upset stomach and or diarrhea.

Side effects vary and meds can be adjusted to find ones have minimal to no side effects. The biggest problem is that the virus can quickly develop resistance so the medicines have to be faithfully taken everyday.

Nausea stomach upset diarrhea

Nausea, bowel issues, potential kidney damage, headache, loss of appetite • Nausea, vomiting, vivid dreams, lightheadedness/feeling flush, rash.

Newer agents often minimal.

Nausea, constipation, dizziness.

GI (nausea diarrhea), autoimmune, high triglycerides.

Nausea, headache, dizziness, possible diarrhea or upset stomach in the first weeks.

Nausea, headache.

It totally depends on the medication. Some weight loss, possible mood changes, hair changes.

Nausea, vomiting, diarrhea, constipation.

Nausea vomiting weakness fatigue.

Depends on the medication.

Rash, nausea and vomiting, headaches, other rarer side effects may also occur. Physicians monitor very closely for side effects however, and the meds are usually well tolerated.

Thankfully, this is so much easier to answer now than even in just the last 5-10 years! Medications are much easier to tolerate now. However, for children, depending on their age, the recommended regimens vary, and as a result so do the side effects. Most common across the board are fatigue, headache, nausea, and these should resolve within 2-4 weeks after starting. Each regimen will have its own set of possible side effects, but in general, once someone has been on their meds over a month, the side effects go away.

2. What long term medical effects should be expected from medication and also the virus itself?

No long term side effects, hopefully we will get you on a regimen that works. Long term effects of the virus if treated are minimal, if untreated, they can be life threatening.

Most children with regular access to healthcare and HIV medication can be expected to live a normal life span. They can go on to have careers and families as well. There are many studies currently underway to better understand the potential long term effects of HIV medications. The data we have so far indicates that they are safe and that the benefits outweigh the risks. That being said, it really depends on several factors such as each individual child’s past health history, access to HIV treatment, etc. If you are considering adopting a child with HIV that has NOT had much access to healthcare or HIV treatment, it’s important to be prepared that they may have other medical issues that will need to be addressed. It’s important to be prepared for that.

Long term side effects are less know with patients who will have HIV from childhood into adulthood. The life expectancy is longer. The early the disease is treated after birth, the less damage to the body. Long term side effects are better studied in adults. There are known issues with abnormal lipid production and bone health.

Potential organ damage, lipodystrophy, neuropathy.

Somewhat still unknown diabetes, liver issues, kidney issues, possible resistance.

Minimal as long as managed appropriately with medications.

Lower viral load if meds work properly.

Possible heart disease, weight changes, diabetes, liver disease.

I worked with children/pregnant women. In adults, I saw far fewer effects from the medication in adults. The largest long term effect I saw in kids was Lipdystrophy and hair loss. I saw very few long term effects from the virus because we Case Managed our children with HIV diagnoses and they were mostly undetectable in terms of viral load.

Nausea vomiting lethargy weakness skin sores- late stage HIV.

Heart disease liver disease lack of strength.

Long term issues include diabetes, renal failure, liver failure, heart failure, bone weakness, lipodystrophy, high cholesterol. It’s hard to tell what’s from the virus and what’s from the meds sometimes.

Long-term effects of the virus: If the virus is detectable (meaning the medication is not working right, or is not being taken every day like it should be), it will continue to make copies of itself and will cause the immune system to weaken. Over time, if left this way, the immune system (measured by CD4 count) will drop to 0 and the body is at major risk of infections, which ultimately can lead to death.
However, with good adherence to medications, the virus should be suppressed (or “undetectable) and PREVENT this from happening! Long-term effects of the medications can be bone mineral density loss, kidney issues, and jaundice, among others.
Thankfully, providers know which regimens cause which long-term side effects and will monitor the person throughout their lifetime for each of these. Anytime one is detected, we have the option of treating through it, or switching to a different regimen.

3. Many insurance companies refer patients to specialty pharmacies to order HIV meds, any tricks you have in dealing with mail order/speciality pharmacies?

Having a personal connection with them. Using the co pay assistance cards is also helpful, but really having an insider is the most helpful.

I have had to deal with this countless times. I have found that it is getting easier overall. The main thing is to be persistent, take notes and ask for clarification about the process. Again, I haven’t found this to be a huge problem but yes, it can come up.

Ask for a case manager.

Get an HIV Medical Case Manager from your local AIDS Support Organization who can help facilitate the process.

Give yourself a week before, always make sure you have refills, when you call to reorder. Ask if they can mail to a local store Walgreens and CVS can, this allows more if a relationship with staff.

Don’t wait for your med to arrive, call them if you b think it’s taking longer than it should.

Order early, before you run out of meds. We referred patients to mail order pharmacies when they were in rural locations. If you can, set up auto-refills.

Work with case management or SW at the hospital who routinely handles HIV patients. Have a case manager assigned through your drug insurance company as well so that one person who knows you is doing your claims.

I am a pharmacist and I work in a specialty HIV pharmacy and we STILL have issues with insurance companies requiring patients to go through mail order. It is extremely frustrating as our patients would prefer to fill locally with us. However, some insurance companies allow patients to “opt out” of mail order (but not all). Using terms like: “I’m concerned about my privacy with mail order” or “I don’t feel comfortable not having a pharmacist in person to speak with regarding any questions I may have” will help patients opt out. Despite all this, insurance companies tend to have their way and get to dictate where a patient fills their medications and it’s horrible. There is legislation that is continually being brought up at the state-level and federal-level to fight for the patient’s right to choose pharmacies. There is lots of opposition (as expected) from major insurance companies, so some of these bills have died, but I encourage you to find out if any are coming up at the state-level during the legislative session and call your senators to tell them how important this is for you!

4. Many parents/patients consider disclosure the hardest part about managing HIV, what are your thoughts on disclosure? What do you recommend people do?

I feel that patients should be told their diagnosis at a young age and educated on the effects of taking medications and taking care of themselves. I understand a family’s desire to be private and I believe that is up to the family to talk to the child about not telling others, but I think it is important to tell the child what they are dealing with.

Our recommendations about disclosure are as follows:
1) Be open and honest. It is important that children know their diagnosis in an age appropriate time frame. Remember, they take their cues from you. If you have shame about their diagnosis, then they will. If you are open and have a positive frame of mind, they will too.
2) Secrets are exhausting and emotionally difficult to keep. In our 20 years of experience we have found that children handle it very well!
3) Avoid a shamed-based approach in talking about HIV. There is nothing to be ashamed about- ever.
4) Be prepared to educate people about. It doesn’t have to be your job to educate everyone – but if you are comfortable doing that – it only takes a few minutes to let people know that HIV is now seen as a very manageable chronic condition just like diabetes or asthma. And that people who take their medicine regularly cannot give it to anyone else.

Training and adherence to standard precautions ensures that school should handle blood as if it is contagious. There is no need to inform people in the public. It is up to the family to decide when and who will be informed. Of course, tell medical personnel. It is illegible to be a known carrier of HIV and not inform sexual partners, so as the child grows they need to know about this responsibility.

If the child is younger I would only tell those that need to know and let the child decide as they get older.

Disclose. The more people who disclose their HIV positive status, the more normative it becomes and the less stigma can flourish.

It’s always at the patient’s pace. Rapport is so important, let the patient lead. If the providers are aware, it’s the patient choice until it is time to discuss sex.

Encourage disclosure with medical professionals, limited disclosure to family and friends.

That’s a tough one because there’s still so much misinformation out there, even among health care professionals. I would disclose on an as needed basis and educate the important people in our lives.

I don’t recommend anything, ever. I explain that this is an individual choice for each family. I do discuss pros and cons of each one. I.E. Pro to disclosing, the message sent is that this diagnosis is no big deal. Pro to NOT disclosing, less issues with stigma due to ignorance. It is not my place to actually recommend to families what they should do.

Education is key. Educate how it’s transferred and disclose how child got the virus if you choose to.

I think disclosure should be only when the person is comfortable disclosing it, but also when the potential of infecting another person is possible, like a sexual partner.

Disclosure only on a need to know basis. Would treat it the same as any other disease, I would tell those who are at risk of transmission.

Definitely disclose to healthcare providers including dentists. Schools and daycares are tricky. Legally there’s no obligation to disclose to them. All have had policies in place for decades mandating that they need to use universal precautions. The stigma against a child whose family discloses HIV status is greater than the practically non-existent chance a child will transmit HIV to anyone. And it will follow him or her forever.

We tell patients that we encourage disclosing to at least 1 person so as not to ‘bear the burden alone’ and to have a support group. The patients that don’t do this tend to struggle emotionally a lot more than others. However, there are lots of protections for HIV patients and they do not have to disclose this information to their employers, schools, etc. We encourage people to tell those they love and trust when they are ready. It is a hard thing to do, but we encourage our patients to bring family to the clinic when disclosing so that we are there to help facilitate discussion around HIV. This usually makes it less of an issue as the hard questions can be answered right away. It also really helps people see that HIV is not a death sentence as it used to be in the 80s! It is equivalent to someone having Diabetes and can be medically managed.

5. Many parents are worried that they will not be able to afford the medication. What programs, if any, are available to assist with the costs?

Copay assistance, ADAP, health insurance, I feel there are many options.

There are many programs available to help pay for medications. Most if not all insurances and Medicaid cover children living with HIV. This is not usually an issue at all. Of course with the changing political environment, it’s hard to know what the future holds.

Most insurance plans cover the medication after their deductible is met.

There are prescription assistance programs and HIV medication programs.

Every state and US territory has an AIDS Drug Assistance Program (ADAP) but every state has different policies in regards to what and who is covered and at what level.

Every HIV med except Viread has a copayment program or patient assistance program. Also, every state has an ADAP ( AIDS Drug Assistance Program) they are each different but worth investigating.

States health programs are a great resource, also health department; may also be drug company savings available.

Depends on the state and insurance. We use hip program, and med assist.

Children’s special health care services, most pharmaceutical companies have discount programs.

We received Ryan White Grant funding. None of my patients ever had to pay for meds. SO many programs are available. If a patient didn’t qualify for one, our social worker stepped in and we found another one.

There are many medication programs that provide free and low cost meds. Too many to list here. Some are gov’t programs, most are through drug companies.

There are lots of programs available! This should never be an issue. In Medicaid expansion states, patients with HIV should be able to qualify for medicaid. Each state should have HIV case managers available to help the patient navigate the insurance system and help them pick out an insurance plan if they are over the income limits for medicaid. If there is no way to get insurance, there are patient assistance programs through all of the manufacturers. If someone does have insurance and has a high copay, every brand name drug manufacturer offers a copay card (available online) that will bring the cost to zero. As a pharmacist, we very very rarely see people having to pay for their HIV medications. The most important thing is to utilize specialized HIV case managers to help.

6. What do you want to say to a parent considering adopting a child with this need?

I believe that for the most part, they are healthy children. But I also think it should known that they have different needs that children who are uninfected. Giving medications several times a day can be challenging, but it can also get easier with time. I also believe that parents should be aware that HIV positive children need to be immunized, they are immune compromised and this is an important part of their health, including immunizing with the flu vaccine. They are great kids and it is a very manageable disease, but I do believe you need to be aware that there are some challenges that come along with the disease and this often includes many medical appointments.

Don’t hesitate! We have seen so many wonderful families with beautiful children who are navigating their chronic condition just fine. Having HIV should not be a reason to not adopt. Educate yourself about the condition, obtain as much paperwork and background information as you can from their country and feel good that you can provide a wonderful home for these children. It really is very manageable in most cases and well worth any challenges you may face!

As in all adoptions, make sure this is what God is asking you to do. Make sure you can ensure a child takes daily medicines and get regular check-ups. No child comes with a guarantee of perfect health. We hold our children in open hands knowing God is the author of their stories. HIV is a chronic disease that needs medical management.

This need is not as scary as it sounds or as stigmatized as it used to be, most can live a relatively healthy life.

HIV is an extremely manageable chronic condition. People who have HIV and are adherent to their medication have almost exactly the same life expectancy as someone who is HIV negative. Also, Anti Viral Retro Therapy medications are constantly improving. Many are available in a once a day single pill with limited side effects.

When children are younger, it’s quite easy to manage and economical compared to other chronic diseases. I say there is no reason not to!! There are enough resources available that your energy can be focused on raising and loving your child, not so much managing an illness that is no longer life threatening.

Discuss with pediatrician first, see if insurance covers, what state assistance covers, and what local supportive resources you have.

Sounds great! It’s doable. The key to treatment will be maintaining compliance.

(I don’t have a child HIV but would adopt a child with HIV in a heartbeat.). A child with this need will need medication management but live a healthy and normal life.

If you feel you can handle this need, as with any need, go for it!

This is easier to manage, medically speaking, than Juvenile Diabetes. The stigma is not easy to navigate. People are still ignorant. Consider your community, but medically speaking, your child will live an amazing life.

With medication these children can live a long healthy very normal life. I was part of the HIV research done at TX Children’s hospital and when babies are born to HIV+ mothers they are treated with antiviral at birth and continually for first year of life. These children were testing negative and continued to test negative. I truly believe, with all the research being done we may soon find a way to eradicate the virus.

I would recommend educating themselves about HIV/AIDS. Meet with other parents for support and advice.

HIV used to be a death sentence. With proper medical therapy now people can live a relatively normal life expectancy.

I feel the best parent for a child with this need is detail oriented and organized with meds and appointments. The parent should be a strong advocate for their child as well. The future of HIV treatment options is bright, there’s never been a case of household transmission through normal activities like toothbrushing and bathroom use.

HIV is scary to most people, but it shouldn’t be. We have excellent regimens for HIV and they keep people healthy as long as they are taken every day. This is no different than someone on medications for Diabetes, high blood pressure, or low thyroid. Yes, there are social issues surrounding HIV, however the medical community is striving to change the misconceptions around persons living with HIV. Your child can live a normal life, be healthy, and enjoy all the wonderful things a family has to offer them. Do not be afraid! 🙂

If you haven’t already, be sure to read the other posts in this series here!

– guest post by two mamas who are parenting children who are HIV+

Gotcha Day: A Teenage Sibling’s Observation

August 21, 2017 7 Comments

Recently I came across a very simple, yet thought-provoking question online…

“What is the saddest thing you’ve ever seen?”

I paused and thought for a moment. A few things came to mind that I had seen on the news, but one of the saddest things that I have seen first hand was a Gotcha Day in China. It was most certainly a happy day as well, but the kind of sadness and loss that went into that day for so many people is something I have yet to see elsewhere.

In April 2017, my dad and I traveled to Zhengzhou, China to adopt my brother, Caleb. Before we left, many people had told me how it would be a very hard day for the kids, and that it would be a great experience for me to see what a Gotcha Day is really like. I didn’t think too much of these things at the time. I assumed that I knew what it would be like. After all, I had seen videos of my brother, Joshua’s, Gotcha Day.

It wasn’t until I was in the room, witnessing the authentic, un-romanticized version of Gotcha Day that I truly began to understand the heartbreak that goes into this day.

My dad took care of all of the logistics and paperwork of Gotcha Day, and my brother was one of the last to arrive, so I had time to watch as the other kids were brought in.

It’s difficult to express the pain and grief that goes into a Gotcha Day for some children. Though some don’t have a difficult adjustment or don’t cry much on the day itself, others do. In the end it is a wonderful thing, however in that moment it seems far from wonderful.

In fact, it feels a lot like a legal kidnapping.

These children are being ripped from everything they’ve known, handed to strangers, and may or may not understand what’s happening to them. Not to mention that, in this situation, the kids were being given to people who don’t speak their language and don’t look anything like them.

That in and of itself is difficult to watch.

One of the things that got to me the most on this particular Gotcha Day was seeing the heartbreak that many of the former caretakers were experiencing as they handed these children to their new families.

The caregivers were a part of adoption that I obviously had known about, but never really given a ton of thought to before. I had always been thankful for them for caring for my brothers, but never really considered the loss that they experience on a Gotcha Day.

Any preconceived notions you may have about a caregiver go out the window when you see the tears rolling down their cheeks as they say goodbye to a child. It wasn’t until I saw the pain on the nannies and foster parents’ faces as they walked out of that room, knowing it was the last time they’d ever see this child, that I realized the pain and loss that goes into this side of adoption.

My brother’s nanny stood off to the side, silently crying as we held him. She was clearly upset, yet resigned to the fact that he was leaving. She nodded and gave a small smile through her tears as my dad thanked her for caring for Caleb.

This was a child that she had cared for and loved.

I’m sure she wanted for him to have a family and knew that he would leave someday, however I doubt you can ever be truly prepared for that day to come.

There’s no easy way to say goodbye.

When Caleb waved and said, “Zai jian, ayi!” (bye, nanny!) I don’t think he really comprehended that this was the last time that he’d see her. But I could tell by her face that she did.

None of this goes to say that good did not come out of this Gotcha Day – quite the contrary. The pain of that rainy April morning soon subsided, another child can now be cared for by Caleb’s devoted nannies, and there is another Muller in the world. (Though some may argue that that last point is actually a scary thought.)

In the end, the good that came out of that day outweighed the hard parts of it. However the big picture can be difficult to see when you’re in that moment, witnessing firsthand the pain and heartbreak that is experienced by so many on Gotcha Day.

I will be forever grateful for some of the amazing caregivers who not only prepared my brothers so well, but sacrifice so much themselves to care for these children.

– guest post by Julia

A Life Donated: Part 8

August 20, 2017 0 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She was initially found to be ineligible, but that would change thanks to a heart failure/transplant program that chose to take a chance on hope and optimism.

Much as we owe her life to the sacrifice made by her birth family in letting her go, we also owe it to the incredible, selfless act of organ donation made by a family in the midst of the incomprehensible loss of their child.

This series is a retrospective of the weeks leading up to Rini’s transplant which took place on November 13, 2013, and it is my hope that it will help to bring awareness to the importance of registering to be an organ and tissue donor.

We all have the power to be someone else’s miracle.

Donate Life!


From October 15th, 2016

On this day three years ago, I was so uneasy. I was scheduled to switch places with Eric the next day but I felt compelled to stay with Rini. The idea of leaving her filled me with dread and panic. Our other children were missing me greatly and our teenage daughter was particularly struggling. I was torn in two. I just felt like I could not step out of that hospital. I couldn’t leave Rini. Something was right there, hovering right outside the door. My anxiety was through the roof.

From my journal:

“Today has been a challenging one. Frankly, it’s been an emotionally terrible day. Today I started to crack. Rini had an awful night, struggling to breathe, restless, hitting me and crying when I tried to comfort her. Her doctors and nurses know her well enough by this point to spot when something is off. Her cough continued and she had four episodes of vomiting, she refused to sit up and wanted me to lay her back down after only being held for a couple of minutes. She did have a few moments where she would play but for the most part she slept all day.

After visiting with friends this morning (thank you all!), bidding farewell to my parents who stopped by on their way to PDX, and saying goodbye to my friend whose daughter was discharged today post-Fontan, we noticed a considerable decline in Rini’s spirits and an increase in her work of breathing. Her cardiac nurses expressed their feelings that it was time to add support, and they paged the cardiology team. Rini fell asleep so I went to the cafeteria and grabbed some soup and headed back towards Rini’s room. I could feel the tears welling up so I stopped in the thoroughfare between the two hospitals and sat down. Two of our cardiologists walked up to me and asked how things were going, and I began to cry. I looked up and one of them had tears in his eyes.

I thank God for the compassionate team surrounding us. The other physician listened to my concerns and she said, “Okay, that’s it. We will head in there right now. The time has come for more support.” Less than two hours later, Rini was admitted back into the PICU to begin Milrinone.

Before we were moved, one of our cardiac nurses came in and told me that they wanted me to call Eric and discuss our resuscitation wishes. Eric and I had already discussed this several times between the two of us over the past weeks, but we did so again. Once I arrived in the PICU with Rini and she was settled and her IV placed, four of our cardiologists came in and we had the talk.

Once again, I thank God for our compassionate team. Four years, three complex cardiac kids of ours in their care prior to Rini, and this is the first time we’ve had to broach this topic. Afterwards, I sat and held Rini’s hand until she fell asleep, and then I started to walk out to make phone calls and get a meal for myself. Our critical care cardiologist, “Dr. Amy”, stopped me and told me that she had called and spoken with the transplant team nurses at Seattle Children’s so that everyone would be on the same page as far as the care being given to Rini in the PICU as we wait to find out if she will indeed be transferred there. They are in full agreement with the current course of treatment, and tomorrow morning she will be speaking with Seattle’s transplant surgeons.”

I reconciled myself to leaving for home after Eric arrived the following morning, and I stayed up late into the night and sat next to my beautiful child’s crib and watched her sleep.

From October 16, 2016

Where do I even start? On this day three years ago, hope won! 

I don’t remember anything about the early morning. From my journal, I know that the day began with Rini’s ICU team notifying me that the Milrinone had had no discernible effect, that Rini’s kidneys were beginning to fail, and that she had “worsening, very advanced heart failure.” I don’t even remember Dr. Amy coming up to me and telling me that Rini’s 5AM labs showed that her pre-albumin level had reached 19.

I can’t recall her telling me that she had been on the phone multiple times that morning with Seattle Children’s heart failure/transplant team culminating in a 10AM conference call with the transplant surgeons. And I don’t have any memory of the moment that I was told to prepare to depart with Rini for Seattle via Life Flight in roughly 2-4 hours. 

My earliest memory of that day is standing in the hallway outside of the PICU, frantically calling Eric who was on his way to the hospital. He and I engaged in an emotional discussion regarding which of us would accompany Rini north, with me stubbornly refusing to budge. Although he was a bit upset with me for refusing to entertain the idea of being the parent to stay behind, he has since told me that he believes it was for the best that I went with Rini. On that day, I just felt in my gut that my disposition would be better suited for what was about to come, even though I had no concept of what that was.

Our children were so disappointed (and in one case, angry) that I wouldn’t be coming home as planned. I remember the intense stress of trying to juggle all that was happening while trying to placate the emotions of our children.

And in the midst of this, I was contemplating the best way to support my 23 month old baby, whose native language I didn’t speak and who was frightened, in pain, and dying.

After I ended my phone calls, I stood and cried. Standing not far from me was a gentleman who was also standing and crying. In the hallway outside of a pediatric ICU, strangers become friends in an instant. He explained that his daughter-in-law was in the PICU at end stage Cystic Fibrosis, waiting to hear if she would be transported to Stanford to be listed for a double lung transplant.

As some of you know, Rini Ann is named after my friend, Ana, who had passed away one month after we adopted Rini. Ana had undergone a double lung transplant at Stanford after a life long battle with Cystic Fibrosis, but had succumbed to cancer over a decade later. Was this meeting happenstance? I think not.

Eric arrived shortly thereafter, and (from my journal):

“The early afternoon was a whirlwind! Our surgeon, Dr. Langley, came in twice to visit with us and assured us that Rini would receive excellent care at Seattle Children’s, and that he would be calling ahead to Dr. McMullen who is one of the transplant surgeons and a personal friend of his. Many of Rini’s doctors came in to express their good wishes and bid us farewell, and the Panda Team (Critical Care Transport) arrived to start a second IV and get her ready to go.

As we were getting ready and I watched as everyone worked together on behalf of our little girl, I felt such a feeling of gratitude for all that we have in this country. The little girl who wasn’t fed in the PICU in China was now the recipient of so much concern and love. Even the news that our insurance company is refusing to cover the cost of her medical transport couldn’t dampen our spirits. Seriously, it didn’t! If it takes forever to pay it off, so be it! We will fight it, of course, but honestly we just shook our heads and laughed. They said that they will cover it only if she actually receives the transplant, because then it will have been a “medically necessary” transport. But as it stands now, they consider this just a transplant evaluation.

After Rini was safely placed on the transport cot and strapped in, she received quite a send off from the PICU staff. There were hugs, cheers, and applause as she was wheeled towards the exit! As soon as we got outside, Rini looked up, pointed to the sky, and smiled.

My head is spinning and tomorrow I hope to be able to articulate some of the emotions of this day. Despite what tomorrow may bring, at this moment I am feeling hopeful and excited for Rini and we’ll take tomorrow as it comes.”

We were so happy, so relieved, so filled with hope! But one of the most challenging tasks I’ve been given during my counseling sessions over the past two years is to give voice to my pain. As it was occurring, I viewed the acknowledgement of it as almost blasphemous. After all, my daughter was alive, my daughter still had a chance. We were fortunate. Oh so fortunate! It could always be worse.

And in my attempt to be thankful each and every day for its blessings, I did not permit myself to concede to its difficulties.

I promised myself when I decided to write this retrospective that I would take a deep breath and validate the pain, the trauma, and ultimately embrace the yin and yang.

“In Chinese philosophy, yin and yang describe how seemingly opposite or contrary forces may actually be complementary, interconnected, and interdependent in the natural world, and how they may give rise to each other as they interrelate to one another.” 

I am so glad we had that day of unbridled joy, because the next week would be among the hardest, most gruelingly unhappy of our lives. We would be thrust into a world in which strangers make decisions regarding the life and death of someone else’s child, and rules and regulations based upon the scarcity of a precious resource govern who is given a chance at life and who is sentenced to death.

From October 17th, 2016

On this day three years ago, the elation of the previous day’s transfer to Seattle Children’s had morphed into primal fear.

After we arrived at Boeing Field, we were taken by ambulance to the hospital where we were whisked into the brand new Cardiac ICU that had just been completely rebuilt six months prior. Waiting for us was Dr. McMullen, one of the transplant surgeons who had been working with our home hospital on the transfer. I appreciated the warm welcome, and it made me feel a bit less alone in a hospital (and city) where I knew no one. I had never been in a CICU (cardiac intensive care unit) before, only a PICU (pediatric intensive care unit), and my mind would be blown over the next days and weeks.

Rini’s nurse began a thorough history and Rini’s first ever echocardiogram at what would become her home hospital took place. I can say with certainty that Rini began winning hearts that very first night, just as she had won mine ten months earlier when I first saw her on Holt International’s photo listing and had been asked to be her advocate.

On the morning of the 17th, I attended my first rounds at the hospital and it’s an experience I will never forget. I want to make clear that we came to love each and every person in that CICU who was part of Rini’s care and continues to be. But that first week, the only love I had was for her nurses. I learned very quickly, just five minutes or so into rounds, that transplant evaluation is a very sterile process.

It was that morning that I met the first of the Heart Failure/Transplant Cardiologists. What unnerved me immediately was that they rounded in front of her room, but off to the side where Rini could not be seen. I desperately wanted to say, “Hey! Look at my child! She’s right there!”

The fact was, Rini was no longer special or unique. We were unknown, without any connections. Here, we weren’t “the family with four cardiac children from China”. I realized with a sick feeling that here she was just another complex cardiac patient dying of heart failure.

That is why, later that day, I taped the photos of Rini and our family that I had brought with me to the glass doors of her room, as well as right underneath her room number and name. I wanted each and every professional in that CICU to see her as an individual, a child who had a family that loved her and who would fight for her.

During rounds, the cardiologist was going through her history and anatomical anomalies and mentioned her severely hypoplastic left pulmonary artery and dimunitive, non functioning left lung, as well as her significantly enlarged right pulmonary artery and lung that had sustained damage from excessive blood flow. A Cardiac Fellow, who later became one of my favorite people because he could always make me laugh, blurted out, “And how exactly is THAT going to work with transplant?!” The cardiologist shot him a “be quiet” look. In that instant, I felt a sick, disgusting, terror-filled wave rise up from my gut into my throat, I began to feel lightheaded and began to sweat.

Oh dear God, I thought. This isn’t just about malnutrition.

I flashed back to the day before as Rini was being readied for transport when Dr. Amy pulled me aside and said, “I just want to be clear that even though she’s going to Seattle, she may not get listed for transplant. There is a chance they won’t list her.” I had completely blocked that conversation out until the comment made during rounds.

I was completely, utterly shaken. What had I been thinking? All this time I had been so focused on her metabolic status. How had I missed this? Had it not been communicated to me? Had I failed to ask the right questions? It was all of it.

Looking back though, I think it was for the best. How much worry can one soul bear?
During rounds that day, I learned that in an excellent CICU, there is an entire team solely dedicated to children with congenital heart disease, cardiomyopathy, and other cardiac diseases. Not Pediatric Intensivists, but Pediatric Cardiac Intensivists. Not Pediatric ICU Nurses, but Pediatric Cardiac ICU nurses. Not Residents, but Cardiac Fellows. There are the general Pediatric Cardiologists, as well as an additional team of Pediatric Cardiac Heart Failure and Transplant Cardiologists in centers that have a transplant program. There are Pharmacists to serve the needs of the CICU, as well as Nutritionists who job it is to manage the needs of the CICU patients. There are Transplant Nurses and Transplant Coordinators, and of course, the Surgeons. It’s an entire world solely devoted to the some of the sickest and most vulnerable cardiac patients. Total specialization.

Having my eyes opened in this way, particularly after witnessing a CICU at work on the sickest of the sick, is one reason that I am now such a proponent of CHD children being treated in experienced CICUs.

Later that day, I would take my first trip to the “Quiet Room”, aka The-Heavy-or-Bad-or-Sad-News-Room at the end of the hall with another of the Heart Failure Cardiologists. She went over in great detail what to expect over the next several days, including meetings with: Transplant Cardiologists, Transplant Coordinators, Transplant Surgeons, Social Workers, Anesthesiologists, Infectious Disease Specialists, Dieticians, Developmental Specialists, and Psychologists.

The testing Rini would undergo would include: PRA Antibody testing, Virology testing, chemistry testing, echocardiograms, electrocardiogram, chest x-ray, cardiac catheterization, cardiac MRI, and others. 

I was told that if Rini were to be listed, she would most likely be listed at UNOS (United Network of Organ Sharing) Status 1A, the most critical status. The current average wait time for a heart in the U.S. at that status was 3-5 months. I remember being somewhat concerned about that, but not nearly as concerned as I should have been. However, that reality would present itself soon enough.


To read the other posts in this series, click here; to learn more about organ donation, click here.


Contributor Q and A: Megan

August 19, 2017 0 Comments

Continuing today with our series in which we share a short Q and A with one of our contributors to give y’all, our faithful readers, a little more behind-the-scenes insight into the amazing group of writers assembled here. And it will also give each of our contributors a chance to share their heart in a …Read More

Advocating for Children With HIV

August 18, 2017 0 Comments

The Lily Project became an HIV advocacy and education blog in October 2015, after its admin visited a group home for kids with HIV in China. She met several children who were waiting to be adopted, and several more who did not have files yet prepared for adoption. In China, as well as in America, …Read More

Attachment Q & A: Still Not Attached

August 18, 2017 3 Comments

Attachment. Not much more could not be packed into one single word, especially in the adoption world. We spent all of July focusing on this most-important topic and decided to continue into August – but with a bit of a twist. This month we’ll be answering your attachment questions. Because we all have them – …Read More

Living with HIV: From the Kids

August 17, 2017 1 Comments

As we see more and more HIV+ children become available for international adoption, we thought that it would be beneficial to hear first hand experience on parenting this need. So we asked prospective adoptive parents what they really wanted to know about having a child with HIV; then posed those questions to both adoptive parents …Read More

A Life Donated: Part 7

August 15, 2017 0 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She …Read More

Waiting to be Chosen: Milla

August 14, 2017 0 Comments

Meet Milla, one of the newest kids at Bethel! Milla came from Maria’s Big House of Hope, but she was transferred to New Hope for foster care but attends Bethel’s preschool during the day. Milla is a very engaged and happy little girl. She is still nervous in her new environment, but she calms down …Read More

Organized Chaos: Managing Adoption Paperwork

August 13, 2017 3 Comments

Call me weird but there is something about adoption paperwork that I actually enjoy. My personality thrives on checklists and deadlines. I love completing a task and knowing that the work is bringing me one step closer to my son. Paperwork is a tangible way to show that I am making progress in our adoption. …Read More

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