I just can’t let Heather’s comment on my previous post go without comment (although I’m not offended at all, because how could you know all the details of our situation), because it strikes right at the heart of our difficulties with this situation. And I certainly don’t mean to attack her, or anyone else who thinks the same. She does bring up valid points, and I’ll try to address them.
When we decided to change our preference for adoption to a child with special needs, we talked extensively with our adoption agency and our social worker. We specifically asked for minor and correctible medical special needs of a defined nature – conditions such as cleft lip/ cleft palate, heart defects, missing limb or digit, etc. Our social worker told us point blank that she didn’t think we were qualified to adopt a child with major special needs, considering the fact that my husband is gone a good deal of the time, we have 2 other young children, live on another continent than our families, and are required to move every few years. We absolutely agreed – we were in no way ready to parent a child with major special needs. Our home study clearly states this.
When we were told about Emmett, what we were told is that there was a child with a VSD, a ventricular septal defect in his heart. This is a correctible (in the vast majority of cases) cardiac condition. We were given medical reports that stated that other than his heart, he had no other abnormalities. Over the course of last summer, we repeatedly begged our agency for more information about his health, about his current condition, anything. We received nothing, and for a period of time, we had convinced ourselves that something had happened – that he had been given to another family, had died, etc – and that this adoption would not happen. Then, all of the sudden, our official referral paperwork appeared! And in that paperwork, on his abandonment report, it said that he had a genital abnormality.
I freaked out. I called our agency, told them that we needed to get to the bottom of this immediately. I told them that another physical abnormality significantly raised the probability of a genetic syndrome, of something uncorrectable, of more than we could handle. Our agency promised to get to the bottom of the story right away.
The next day we were assured that the report is mistaken, that there was no genital abnormality – and we were sent our second picture of him, completely naked. In this picture, you can see no obvious abnormality – he looks completely normal, with perhaps slightly wide spaced eyes. Our agency told us that they had spoken with their representative, who had spoken with the orphanage director, and these assurances came directly from her.
Shortly thereafter we received our approval to travel – 5 days after they received our application.
We arrived in Vietnam, traveled the next day to Vung Tau, where he lived. We ran into a huge traffic jam and were at least an hour late arriving at the orphanage. As a result, we were able to spend about 20 minutes before our G&R with Emmett. And honestly, I think I was in shock. To me, he behaved in a way that strongly suggested developmental/neurological abnormalities. But he had lived his whole life in an orphanage. They never let him sit up, because of his heart. He was obviously small, due to his heart defect. And so we dumbly and mutely rode to the government offices, signed the papers, and were delivered to our hotel.
I later had multiple tearful conversations/yelling matches with our agency’s Vietnamese representative. I told her how concerned I was about his condition – she told me that she had given information about his physical condition and development to our agency. Our agency claims they never received this information.
That is the story of how we adopted Emmett. Were there lies involved? Absolutely. Did they come from the orphanage director, who wanted this child out of her orphanage both for his own good and for selfish reasons (we were told he had a nanny devoted only to him 24 hours/day)? Did they come from the agency representative, who was anxious to complete this adoption for multiple reasons? Did they come from our agency – this I don’t really believe – they stand the most to lose here – and while I think they did many things wrong in our case, I don’t believe that they lied.
The way that the whole process happened has definitely affected how I feel about our family’s situation (and there are multiple other things that happened while I was in Vietnam related to his adoption but unrelated to his health that I don’t feel comfortable discussing here). I feel like we were lied to, that we walked into a situation blindfolded and totally unprepared. If we had had even the physically apparent information about Emmett – that he has hypospadias, that he has a huge open fontanelle, etc – in addition to knowing about the heart defect, we would not have adopted him: we would have felt that the possiblity of a genetic syndrome was too high and that would be more than we can handle. If we had had even a night in Vietnam after meeting him before our G&R to talk to our families, our agency, etc, what would we have done? I really can’t say – could we have left a child that so obviously needed to get out of an orphanage immediately, knowing that adoptions to the US were shutting down in a matter of days and that we could be resigning him to life in an institution? But the point is that we didn’t really get to decide. For better or worse, others decided for us, and that makes my anger and frustration even harder to let go.
The more valid point Heather raises is this – if he was our biological child, would we feel differently? Who can answer this question? I know for a certainty that if we were pregnant with a child and were told that he or she would have all the problems that Emmett has, abortion would not be an option. It just isn’t, for us. And of course, lots of things don’t show up after birth, so we could have been just as blindsided. We wouldn’t feel deceived, but I think everything else would be about the same. We would still struggle with whether we should move or not. We would still have to weigh the needs of one child against the needs (short and long term) of our whole family.
I also want to make it clear that staying would not mean that Emmett wouldn’t be receiving good medical care. It would mean that he would have the ng tube for longer (maybe, although Mike and I doubt that we could move and start new referrals in America and get the surgery scheduled before the British timeline anyway), but that is more of a pain in the ass for us than him. He is gaining weight beautifully on the tube. Developmentally, he sees a physical therapist and speech therapist once weekly, and a developmental pediatrician once every month or two. I’m not sure they would do more, early intervention-wise, in the States.
The decision is really hard for us because HERE is where our life is. We have great friends here, friends who give us wonderful physical and emotional support.
We have a great squadron here, with leadership that understands what’s going on with us – as well as leadership who knew my husband before we got home with Emmett, who don’t just define our family as the ones with the really sick kid. My husband is a respected member (we think) of our Air Force community.
We have a fabulous pediatrician, whom we’ve seen on a weekly basis since we’ve been back from Vietnam, one who actually has insight into adopted children, since he has an adopted child himself.
We have a 2 great cardiologists here, who have stepped outside of their roles as heart guys to counsel us, and to work the British system for us.
We get along well with the PT and speech therapist. We love the head of Early Intervention here.
Almost everyone involved in Emmett’s care has really gone above and beyond for our family.
Noah is in school here – every day from 9 to 3. Sawyer goes to a fantastic baby-sitter once weekly – a babysitter that has told us that she will watch Emmett too if we can get to a point that I can back to work.
We would lose all of this support, and more. Who will I go to the movies with – to eat exceedingly bad popcorn? Whose house will we spend Saturday nights at, just hanging out? Who will I catch lunch with? We have no idea at this point where the Air Force will send us. We hope Florida, where we do have friends (Beth, that’s you, and Carolyn and Ted, and others), and family close by, but we don’t know.
Its just a lot to consider. But keep the comments coming. I don’t mind hard questions – I spend every day all day thinking about this stuff. Its always helpful to count your blessings, and we are blessed here. We are living with a very difficult situation, but we have a lot of people helping us and working on our behalf. I have a lot that I complain about (obviously) but also a lot to be thankful for here. Without our extensive support network, we would not have made it this far.