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Neonatal Alloimmune Thrombocytopenia

YTP
0 Recommendations

Has anyone had a diagnosis for their newborn baby called Neonatal Alloimmune Thrombocytopenia (NAIT) or fetomaternal alloimmune thrombocytopoenia (FMAIT)? Fetomaternal alloimmune thrombocytopenia occurs when the mother produces antibodies against a platelet alloantigen that the fetus has inherited from the father. A consequence of this can be a reduced number of platelets (thrombocytopenia) in the fetus, which can result in bleeding whilst in the womb or shortly after birth. In severe cases this bleeding may lead to long-lasting disability or death. I would like to hear from anyone who has had a baby with very low platelets at birth.

Explore topics in this discussion:

Prednisone Thrombocytopenia Pregnancy

4 replies

NORDGeneticCounselor

The Platelet Disorder Support Association may also be able to help you connect with other families. The link to their web site is as follows:

http://www.pdsa.org/about-pdsa/index.html

YTP

Thank you for your help but I've had a look and their website is about ITP mainly and their links are quite out of date - but bless you and thanks anyway.

kentw

Hi,

We are the parents who have dealt with neonatal alloimmune thrombocytopenia (NAIT, NATP, FMAIT, FAIT), and feel fortunate to have 3 wonderfully healthy NAIT children. Our first-born had a platelet count of 20,000 (per cubic milliliter), but quickly responded to IVIG and suffered no lasting effects. We underwent platelet genotyping that determined (nearly) 100% chance of recurrance.

Our other two pregnancies involved treating with IVIG starting the 5th week of pregnancy (and Prednisone at times), and we achieved normal platelet counts in both births. I am not a doctor, but am well read on NAIT. I would be happy to try to answer any questions you may have, but am most familiar with treatment in the US. It still needs a lot of work, but I have some started to put some NAIT information at the website www.naitparent.com.

NAIT is treatable, but in my opinion, some doctors error more on the side of caution than others. Mainstream treatments continue to trend earlier with less invasive techniques, which is a direction I personally support based on the evidence I have read. There is not too much disagreement on the current drugs to use in treating NAIT, but a good deal of disagreement on when to start them (IVIG will cost your insurance company a good deal) and if invasive procudures (using a needle in utero to draw blood for a count) should be used. We sought out doctors who treated early and use non-invasive testing techniques, but other older-style protocols generally work out well, too.

Regards,
-Kent

ourmiraclekids

Hello I am Stephanie and unfortunately both my children suffered from NAIT. We were diagnosed after the birth of my first who had bilateral brain bleeds from it. I had received treatment from Dr James Bussel and Dr Richard Berkowitz both affiliated with Weil Cornell in NYC. I am happy to say that my second born Jason is a happy healthy 17 month old.
We have a support group for this condition and there are also a few groups on facebook where parents share info. Both sites are an amazing resource and have a lot of parents who are going through it together.
http://health.groups.yahoo.com/group/NAIT/

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