Looking at the date today I realized that we are just under two months away from going in to get the results from Nicolas' second set of tests, the tests that should explain what is going on with his blood, give us an idea of his life expectancy, and prepare us for what to expect from the coming years. As I've shared before, the doctor believes that the most likely outcome of the tests is that his fetal hemoglobin will have decreased significantly, leading to a diagnosis of sickle cell disease. If that is the case, then we will probably never have a medical explanation for why Nicolas' body continued to make fetal hemoglobin long after most people's bodies stop. The presence of this mysterious blood is the reason that Nicolas doesn't have a definitive diagnosis now (well, that and insurance company protocols for DNA testing), and the reason that our lives are in this weird medical limbo for the next few months.
Now, you can bet that we are praying like crazy that Nicolas has that second hemoglobin disorder, the one that would actually explain the presence of those fetal cells and allow him to live a mostly normal life. Obviously that is the best possible outcome from our perspective. But, the way I see it, whether those special fetal blood cells continue to course through his veins or not, they were a huge blessing to him and to us. If in three months Nic's fetal hemoglobin cells are greatly diminished, I will be so thankful he had them for as long as he did, even if they brought a period of (unwelcome and unwanted) uncertainty to our lives.
Here's something you might not know about fetal hemoglobin: fetal hemoglobin is the current best treatment for sickle cell disease. If Nicolas does in fact have sickle cell disease he will eventually take drugs that prompt his body to produce fetal hemoglobin (isn't science amazing?), as fetal hemoglobin cells help keep sickle cells flowing through a person's body in a more normal manner instead of jamming up in various veins and organs and causing problems. Nicolas' current high level of fetal hemoglobin is likley responsible for his apparent fantastic health (really, this kid looks so healthy), and his total lack of complications thus far even though sickle cell disease can cause problems in infants as young as four months of age. They explain his healthy spleen, his lack of finger and toe swelling (dactylitis), his excellent growth rate (we were told he was very small as a newborn and now he is in the 50th percentile for height/weight on American growth charts which means he has been growing fast- infants with sickle cell usually have delayed growth), and his lack of infections. When you consider the quality of medical care he would have received had he gone through any kind of sickle crisis in Congo, caught pneumonia or any other nasty illness that sickle cells makes him more vulnerable to (really there are so many to choose from in the developing world), those fetal blood cells are nothing short of a miracle.
That is why, either way, he has been blessed. If he has that second disorder that will allow his body to continue to produce fetal hemoglobin, we will count it a huge blessing. If the tests reveal that his body has stopped producing fetal hemoglobin, as it should have months ago, we will be grateful that God gave him fetal hemoglobin as long as he did, knowing that it protected him while he was away from us and in a place where first-rate medical care is not available. What a gift his fetal hemoglobin has been to him. And he, in turn, is a gift to us. Thus, whatever the results those tests bring, we are blessed. We have Nicolas, so either way, our joy abounds.
Now, you can bet that we are praying like crazy that Nicolas has that second hemoglobin disorder, the one that would actually explain the presence of those fetal cells and allow him to live a mostly normal life. Obviously that is the best possible outcome from our perspective. But, the way I see it, whether those special fetal blood cells continue to course through his veins or not, they were a huge blessing to him and to us. If in three months Nic's fetal hemoglobin cells are greatly diminished, I will be so thankful he had them for as long as he did, even if they brought a period of (unwelcome and unwanted) uncertainty to our lives.
Here's something you might not know about fetal hemoglobin: fetal hemoglobin is the current best treatment for sickle cell disease. If Nicolas does in fact have sickle cell disease he will eventually take drugs that prompt his body to produce fetal hemoglobin (isn't science amazing?), as fetal hemoglobin cells help keep sickle cells flowing through a person's body in a more normal manner instead of jamming up in various veins and organs and causing problems. Nicolas' current high level of fetal hemoglobin is likley responsible for his apparent fantastic health (really, this kid looks so healthy), and his total lack of complications thus far even though sickle cell disease can cause problems in infants as young as four months of age. They explain his healthy spleen, his lack of finger and toe swelling (dactylitis), his excellent growth rate (we were told he was very small as a newborn and now he is in the 50th percentile for height/weight on American growth charts which means he has been growing fast- infants with sickle cell usually have delayed growth), and his lack of infections. When you consider the quality of medical care he would have received had he gone through any kind of sickle crisis in Congo, caught pneumonia or any other nasty illness that sickle cells makes him more vulnerable to (really there are so many to choose from in the developing world), those fetal blood cells are nothing short of a miracle.
That is why, either way, he has been blessed. If he has that second disorder that will allow his body to continue to produce fetal hemoglobin, we will count it a huge blessing. If the tests reveal that his body has stopped producing fetal hemoglobin, as it should have months ago, we will be grateful that God gave him fetal hemoglobin as long as he did, knowing that it protected him while he was away from us and in a place where first-rate medical care is not available. What a gift his fetal hemoglobin has been to him. And he, in turn, is a gift to us. Thus, whatever the results those tests bring, we are blessed. We have Nicolas, so either way, our joy abounds.
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1 comment:
That last pic in his overalls is so sweet. Melts me every time.
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