Hi all -
I've had ITP for years, and grateful to say it's never bothered me after my splenectomy. But when my daughter was born (about 4 years ago), she had very low platelets. Her platelets bounced back (after several platelet transfusions, then IVIG, concern about an intercranial bleed, 2 spinal taps, and a heck of a lot of worry - it was a rough start for the first couple of months!), but she's healthy as can be now.
I've thought about trying to have a second baby, but I've gotten mixed signals from the doctors - the high risk pregnancy specialist I had in the first pregnancy recommended I not try to get pregnant again. I think she thought I had NAIT, and so I went to a second doctor, he tested, and that's not it - just ITP. But still, it sounded risky, and I don't feel like I've been able to get a clear sense of the risk from the docs. Plus, it's confusing which kind of doctor to talk with - a neonatal ITP doc, or one who specializes in pregnancy?? The doc. I saw at children's hospital here in Boston recommended someone at Duke (in North Carolina!) - that has scared me away from following up on this. Anyone have any suggestions for finding a doctor to help assess the risks? Any recommendations for doctors in Massachusetts?
by the way, if anyone on this list does end up having a baby with low platelets, if the docs want to do a transfusion, IVIG worked much better in our case than doing a platelet transfusion. The doctors at children's hospital knew that, but the doctors at the community hospital where I was delivering the baby, and where the problem was first discovered, did not. Do not hesitate to get your baby to the best children's hospital in the area, even if it means an ambulence ride for you and your kid.