I'm trying not to worry.
John has spherocytosis. When he was 18 months old he almost died, until they figured out what was causing the internal bleeding and removed his spleen as a result. So with every baby we have had him tested for spherocytosis. John Nathanael and Joshua are fine; I almost didn't have Austin tested. He's not sick at all.
When I took Austin for his immunization in February I also stopped by the lab and they drew blood for the spherocytosis test. Over a month later we get the call - "Austin has occasional spherocytosis."
What does that mean? John has hereditary spherocytosis; we've never heard of occasional spherocytosis. The doctor didn't think it was too urgent, but suggested we see a pediatrician who specializes in blood disorders; he thought it would be a couple of months or even summertime before we'd get an appointment. Yesterday we got another call - "the specialist can see you on April 15th." Okay, maybe this is a little more urgent. Maybe I should be worrying more. This specialist in Saskatoon may be the same guy who I took Josh to for his spherocytosis test back in 2003. If it is, this doctor's own son has spherocytosis and that is why he studied this specialty. I think we'll be in good hands. He inspired a lot of confidence for me back when Josh was a baby.
Just in case you were wondering, spherocytosis is where the red blood cells are round and rigid, rather than oblong and flexible. They are able to carry oxygen, just like normal red blood cells, but the spleen mistakes them for old, damaged red blood cells and destroys them. The bone marrow then becomes more active, producing more abnormal red blood cells, which the spleen destroys, forcing the cycle to continue. This can cause jaundice, hemoraging, and internal bleeding. From the reading I've done, the only treatment for spherocytosis is blood transfusions until the child is old enough to have the spleen removed without the risk of life-threatening infections. John has lived without a spleen for over 42 years; he basically has the immune system of an 18 month old, resulting in frequent illnesses, but he's still alive.
1 comment:
I hope it all works out. While I've never heard of "occasional spherocytosis," there are varying degrees of the disease. I and most of my family on my mother's side all suffer from spherocytosis. And my sister and mother and most of my cousins and uncles have had there spleens removed. But I (at age 44) and an uncle (70ish) still have our spleens. I do suffer from chronic anemia, but no one in my family has any major complications due to spherocytosis and we haven't required blood transfusions (but as I said, most of my family has had their spleens out due to past complications). Both of my children also have hereditary spherocytosis, but they still have their spleens at this point. Good luck and best wishes. I don't check this email often (not sure why I mention it).
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