Because we are open to parenting a “special needs” child, I’d been looking at the “Waiting International Children” pages of our adoption agency. Face after precious face smiles at you, all children who are either older, have medical issues that are more moderate to severe, or are both.
Many of the kids simply need surgery or medical treatment, at which point, they should be able to have a great life. Some kids are dealing with intergender issues, which will mean helping the child to decide whether they feel like a girl or a boy, and dealing with the medical issues that come with that. There are some blind children and some deaf children who just need a home willing to parent kids with those conditions. There are also kids with much more severe disabilities; it’s hard to see their faces and imagine them without a family.
In looking through these gorgeous faces, a 5-year-old boy stood out to my husband and I. In his picture, he’s smiling and leaning in, and there’s a spark to his eyes. In reviewing the brief overview on him, it said he had a condition where the ribs grow inward and often constrict the heart and lungs. Seeing that, it made sense to us that his bio also mentioned that he tired easily with exercise.
I googled the condition and found out that it’s very correctable; in fact, surgery to repair the ribcage often reverses or instantly improves any cardiopulmonary issues. I then reached out to a couple of doctors to see if this might be the case here, and with the limited information I could give them, they both agreed that it could be - IF there was nothing else going on.
At that point, we felt like we had a basic grasp of the issues and asked for his complete medical file, with the absolute intent to adopt him. In fact, we began making plans to send him to our local Montessori school as soon as we got back from China, since he’s been at an orphanage for his whole life and would be used to having kids around. We figured that even if he didn’t understand English at first, he’d feel more at home being with kids for a half-day than just being stuck with two adults in a totally new place.
We received his file which contained the story of how he came to the orphanage, his life there, his likes and dislikes, and some heartbreaking information about a family that had apparently done a lot of testing on him–enough to the point that he believed he was being adopted and began telling everyone at the orphanage so. That family declined him; he still tells everyone he’s being adopted soon.
I wanted to fly over there and pick him up the instant I read that.
As part of his file, there were two videos of him picking up toys, singing the most adorable song in Chinese, and coloring. His caretaker obviously loves him; she smiles and laughs and gets him to look at the camera. Watching this precious child, our hearts melted. We were ready to make him our son.
But—we had one more hurdle to clear: The medical review.
An important part of the process for international adoptions—and for many domestic ones—is the medical review, where a doctor who specializes in international adoption takes a complete look at all the medical information. In this child’s case, there were EKGs and medical reports with lots of medical terms. Most of it was in Chinese.
I glanced at it before I sent it on to the international adoption doctor; some things seemed a little concerning (he was taking a couple of medications, for instance), but I was still SURE we could handle it. In my mind, we'd get him here, get him the best treatment we could, and change the outcome, giving him an incredible life.
About a day later, the response came in from the doctor, and it was grim.
It stated that he has a genetic syndrome and is in the early stages of congestive heart failure; the issue with the ribs was merely a symptom of a much larger picture, and fixing the ribs would not fix the heart. If he makes it for the next couple of years (and there was a good indication he might not), he’ll very likely need a heart transplant. If he manages to get a heart transplant, there's still a good chance he will die very, very young.
I felt like I had been hit in the stomach. Actually, I wished I'd been hit in the stomach; that I could deal with. THIS felt like we'd just been told our child was dying of a heart condition.
Tears streamed down my face as I tried to process the information. What do we do? Was there ANY way we could change this outcome? Was there any way we could save this child?
A soft knock came at my office door; my husband came in, and the second I looked at him, I knew he had seen the report, too. With tears in his eyes he said, "I don't know what to do here; I feel helpless to help this child. What do we do?"
I stood up and hugged him, and we both cried harder than I think we ever have.
You see, that's the thing about adoption. When you want to adopt and are ready to adopt, the child is already YOUR child, even if they aren't in your home yet. When you get news this devastating, it drops you to your knees.
Gathering myself up a bit, I reached back out to the doctor, hoping more questions would somehow give a better response:
“Would medical treatment change this outcome? What are the chances that we could improve his odds? Can he travel in this condition, or are we making it worse?”
The responses back were incredibly compassionate, but firm:
Medical treatment in the US might improve his situation a bit, but because this was a genetic condition, no medical treatment would reverse it. His odds weren't great, no matter what we did. He could potentially travel, but it would be stressful on him and we'd need to get him fully evaluated as soon as we got him home. It could also be too much for him and he could get much sicker much quicker..
And finally, the worst news of all: The stark reality is that there is little chance this child would make it to young adulthood with the degree of cardiovascular failure he was already facing.
I felt like the bottom dropped out of my heart.
Armed with this information, my husband and I talked all weekend long about what we should do. Could we just take this child knowing that we'd lose him sometime in the (maybe near) future? What would his life be like going in and out of hospitals here? Do we have the financial ability to care for a child with cardiovascular failure? Was it even the right decision to uproot him from all he knows–and from all his friends and caretakers that love him—and bring him to a foreign land?
On top of all of this, I carried an additional burden. You see, my husband was so ready to adopt this little guy that he hadn't even wanted to do the medical review in the first place. His attitude was that if he was our biological child, we'd just deal with whatever it was. Why did we need to know? By doing a medical review, he felt like we were saying that a child that was less than healthy wasn't worthy, and neither of us felt that way at all.
I agreed, but had been counseled by our agency that it was critical to know what you were getting yourself into, because you needed to be 100% sure that you had the financial, emotional, and physical resources to be able to take that particular child. It serves no one for a child to be placed in a home that is not ready for him or her, or unable to care for his or her special needs.
I felt so guilty; if I hadn't asked for the medical review, we would have just adopted him. We would have dealt with it going forward. If we now decided that we couldn't or shouldn't adopt him, had I sentenced him to the rest of his life in an orphanage, since other potential parents would now know for sure what was wrong with him?
Even worse, if we didn't adopt him, would someone else put this precious child through invasive testing, getting his hopes up that he was being adopted, and then dashing them again? I still can't think about that without tears in my eyes. I felt like we were playing God with a child's life.
In the end, after much soul-searching, talking with medical professionals, and talking with our home study social worker, we had to come to the decision that we couldn't adopt this child. We felt like the most horrible, selfish people making that decision. It took me an entire hour to craft the email to the agency declining the adoption; I couldn't see the keys or my screen for all the tears streaming down my face.
Our agency wrote us back immediately with the most compassionate response, letting me know that they WOULD be able to find a home for this child, and that us paying for the medical review actually helped his chances of being adopted, rather than hurt them. Gratefully, there are people who specifically look to adopt kids with cardiovascular issues; they are usually medical professionals with experience in taking care of a child with heart conditions.
I did feel comforted in that knowledge, and I did feel some peace in knowing we made the right decision, but it didn’t take away the hole in my heart from having started to love this child and not be able to bring him into our lives.
It's been a few months, and while we know we made the right decision both for us and the child, we still cry about it. My husband is just now able to discuss it with friends; before he would try to open his mouth and had to excuse himself from the conversation because he got so choked up.
I think about this little boy every single day. I pray that he is well, and that he finds a wonderful home that can give him the best care possible.
Let me also say that going through this has really increased my compassion for the difficult decisions people must make. Before this happened, I couldn’t understand how anyone would ever—EVER!—decline the adoption of a child. I don’t judge people for having to make that decision anymore; now I understand all too well.
Read about the Baby We Couldn't Adopt.