Not long after our boys came home, we learned that Jellybean (age 5) has a form of Sickle Cell Disease. Before we got the boys in to see our pediatrician I knew there was something going on with him...something just wasn't 'right' with him, but I couldn't put my finger on it. So when the doctor called and asked if we could make an appointment to come in to talk to her about test results, I wasn't terribly surprised. But I wasn't necessarily expecting to hear that his issue was Sickle Cell. I didn't know much of anything about sickle cell. I knew how it is inherited, because I've taken classes in genetics and sickle cell is always used as an example of genetic inheritance in textbooks; I knew that people with sickle cell (or people who are carriers) are less susceptible to malaria...but I had no idea what having sickle cell would be like.
I know that some of you are thinking "Didn't you know before they got home that he had sickle cell? Isn't this something they would have tested him for?" And the answer typically is that yes, children are tested for this before they are referred to a family for adoption....and that means that typically this is something that would be known ahead of time. But, for one reason or another it was missed. Perhaps his blood sample was never actually taken (this poor boy screams at the top of his lungs when a needle is in sight); or perhaps his sample wasn't actually tested; or perhaps his sample was tested incorrectly; or the results were interpreted incorrectly by the doctor who looked at them. It doesn't really matter - it is what it is. And the truth is, I know that if we knew he had sickle cell it wouldn't have made a bit of difference anyway. He still would be our son and we wouldn't have thought twice about it. The only difference would have been that we could have prepared ourselves for it a bit more by reading about sickle cell and contacting doctors in our area who know more about it. In some ways, though, I am glad that I didn't know. If I had known about it earlier, I would have worried MUCH more about him and would have gotten far more impatient than I already was to get him home. And many of my worries would have been warrantless. After all - we were already working as fast as possible to get them home - worrying more wouldn't have made a bit of difference.
Am I upset that our agency didn't catch this? No...without a second thought...no. Adoption in Ghana is still new; our agency is still in the pilot stages and they are doing GREAT things. Our boys were two of the very first children to come into their care. The in-country staff was still learning about what clinic to visit; what doctors to see for the children in their care (they have since switched to a different clinic). No child ever comes with a guarantee (even birth children). Z and I would take the risk again in a heartbeat....and we'd use the same agency all over again to do it. In fact, we hope to start the process again in a couple years or so (but don't tell anyone just yet). ;)
On Friday we had our first specialist visit with a doctor at the University of Iowa Children's Hospital. The PA and the doctor we saw were both great. They explained everything in detail, told us what to watch out for, how to deal with things, and they answered all of our questions. They told us we will have to be pro-active with his health; we'll have to educate our local doctors on how to treat him (and they told us our local doctors will probably not take these "lessons" very well - but that we'll have to be persistant and insist they do certain things). They also gave us some websites to check out as well as some pamphlets and a book to read. They are now going to refer us to a doctor who practices at a children's hospital located closer to our home town, so that future specialist visits will not require a 2 1/2 hour trip.
I am still coming to terms with what this means for my little boy. I'm learning about what this means for his everyday life and for his life in the long-term. Some of what I'm learning is scary...and all of it makes me sad for him. I know this means that his life will be a little bit harder....a little more painful...and perhaps a little shorter than the average person.
One thing that I do know is that he is an incredibly strong and resilient little boy. The fact that he made it to age 5 in less than optimum conditions (and is so healthy) is proof of this. Now that he is here, he has access to emergency rooms at any time of the day/night that he might need them; he has access to antibiotics that he can take daily and immunizations that can help boost his immune system; he has access to specialists who can prepare his parents for what's ahead and how to deal with things; and he has access to pain medication when he needs it. For all of these things I am grateful.