And they weren't good. We found out, that yes, NAIT was the cause of Jay's extremely low platelet count. The next question was what were the chances of it happening again. Tne answer? 100%!!
The reasoning was that my platelet typing was HPA 1B/1B, which basically meant I was negative of a certain antigen (kind of like I was missing a protein on HPA 1.) Jeff on the other hand was HPA 1A/1A, which meant he was completely positive of that certain antigen or protein. What that meant for us having children was that every time we conceived, I would give the baby one of my HPA 1B platelets and Jeff would give the baby an HPA 1A platelet.
After that occurs, my immune system would eventually pick up on this strange antigen that my body lacks, see it as a foreign body and being making antibodies that would pass through the placenta and attack the baby's platelets. Then baby's spleen would get rid of those platelets with the antibodies, leaving the baby extremely thrombocytopenic and at risk for a bleed, namely in the brain, which can cause extreme brain damage or death.
Nice, huh? Oh, and what made it SO much better, was to find out that my platelet typing was only present in about 2% of the population!! Yeah, you read that right - 2%!! WTH!!!!! Now, if Jeff had also been an odd bird like me and been HPA 1B/1B, we wouldn't have the problem at all, though if we ever had girls, they would have a problem with their spouses since more than likely, their husbands would sport an HPA 1A like most people in the world. If Jeff had been HPA 1A/1B, then we would have had only a 50% chance that the next baby would be affected. But NOOOOOOO, we both had to be pure breed homozygous people. Awesome.
But Dr. Moise was still very positive. He told us that even though Jay's counts were very low, he still managed to not suffer a bleed because the platelets he DID have were functioning. There are many babies out there whose counts are significantly higher (though still very low), but higher than Jay's counts, and they suffer massive bleeds, sometimes while in their mothers. So that being said, we were put into a moderate risk category instead of a high risk for bleeds.
Treatments would be grueling and another baby would mean lots of worrying on my part. So now the question was, should we have another? Do we dare tempt fate? Dr. Moise's advice was yes, have one more, and make that be it. The more babies you have, the more problems you have with NAIT because it becomes harder and harder to trick your immune system even with all the medications. Not to mention that the medications are very yucky and cause lots of side effects. Oh yeah, and one of the main medications is actually made from human plasma, so blood products. Really cool, right? Most women test positive for viruses like Hepatitis and HIV for at least a year after finishing treatments. It's not that they really have the viruses. They are just surface antigens from the medication and eventually get out of the mother's system, but still, not too cool to have an HIV scare!
NAIT is very much like RH disease, except that it's on the white blood cells instead of the red blood cells. RH negative people account for about 15% of the population and prenatal testing is routine, therfore, they can put off the mom's immune system with the very first pregnancy. NAIT only affects about 1 in 1000 babies and right now, they can't validate the cost of testing every pregnant woman. Though if they did, and they could identify which women lacked the antigens, there would probably be a way to put off mom's immune system with the very first baby and possibly prevent problems in future pregnancies. I, personally, am very hopeful that at some point in the not so distant future, platelet typing will become standard with mothers-to-be and hopefully, NAIT can be like RH disease. It can be virtually prevented and not be something so scary. Remember, not so long ago, RH disease killed a lot of babies. Now most women have hardly any complications if they are caught in the first pregnancy.
In my next post, the decision to try or not......
Monday, December 21, 2009
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