Neonatal Alloimmune Thrombocytpenia (NAIT) Parents

Sharing the lessons learned from our NAIT pregnancies. We would love to hear from you on our Contact Us page or by email to kent_wetzel@yahoo.com (or kent@naitparent.com) and LauraJWetzel@yahoo.com. Thank you!

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Neonatal Alloimmune Thrombocytopenia / NAIT Parent Home Page
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We our parents of three wonderful NAIT children.  Our fistborn son, Caleb, was born with a severely thrombocytopenic platelet count of 20,000 platelets per cubic mililiter.  Fortunately he was diagnosed quickly, suffered no bleeding and responded quickly to IVIG treatment, allowing him to be released from the hospital in a normal timeframe.  We underwent platelet genotype and antibody testing at the Blood Center of Wisconsin and found that we have a 100% chance of NAIT recurrence.  My wife is homozygous for the rarer HPA-1b/1b (PLA2/PLA2) platelet type and I am homozgous HPA-1a/1a.  After consulting with many doctors, we found at that time back in 2000, most were recommending treating with IVIG starting around 20-24 weeks gestation.  After reading all of the research data we could find, we found that many babies were already severely thromboctypenic by this 20-24 week timeframe and babies had died as early as 16 weeks gestation from NAIT.  When we questioned why they did not begin treatment sooner, all of the doctors said that was just the accepted timeframe and could give no scientific basis of substance.  We continued our search and by the grace of God, we were led to Dr. Alan Beer by the post of a NAIT mom on the INCIID forum.  He provided many of the answers we were searching for, and led us to his protege, Dr. Joanne Kwak-Kim.  Dr. Kwak-Kim guided the treatment of our daughter, Grace, who was born in 2001 with a wonderful normal platelet count of 152,000, and of our daughter Jordan, who was born in 2005 with a platelet count of 194,000.  We began treatment around the fifth week of pregnancy in an attempt to prevent a strong maternal immune response and it clearly worked.  Our family is living proof that NAIT can be treated successfully.

 

While we are not planning to have more children, I continue to follow much of the NAIT research as time permits.  I am pleased to see that treatments have trended earlier over the years with many beginning treatment around 16 weeks and Dr. Kwak-Kim starting around week five.
 
We love to hear from other NAIT parents, so we invite you to contact us and tell us your NAIT story or ask any questions you may have, and we will do our best to provide information or point you to where to find answers.  We have corresponded with hundreds of NAIT parents over the years and learned much in the process.  Thank you!

 

Excellent Neonatal Alloimmune Thrombocytopenia (NAIT) Outcomes Are Possible!

 

"In my experience the 100% survival rate is seen in women treated with IVIG every month from the start of pregnancy.  Do not accept a lesser protocol.  If this is not available to you I will order the proper management." - Email quotation from the late Dr. Alan Beer when I emailed him regarding Dr. JB Bussel's protocol in September of 2004 (at that time many US doctors followed this protocol of beginning treatment at 20 weeks or later, often starting treatment after the onset of severe thrombocytopenia instead of treating sooner like Dr. Kwak-Kim and others do now.)  While I have seen no research data to back up Dr. Beer's bold claim, I also know of none that contradicts it.  Dr. Kwak-Kim worked with Dr. Beer for many years and continues his work treating NAIT parents, along with those experiencing immune-caused recurrent miscarriage and IVF failures.

 

For more information on treating NAIT, visit our NAIT Treatment page.

 

Your sisters may be at risk for NAIT if you have a rare platelet type that caused NAIT, so they should be genotyped if planning to have children.  It is also possible for a sister-in-law to build antibodies if your brother shares your rare platelet type (these types of NAIT cases are rarely reported, but there is at least one family I read of in an email where the husband has the rare type causing NAIT and the mom has the normal type.)

Platelet Image




What Causes the Thrombocytopenia (low platelet count) in a NAIT Baby? 

 The mom produces antibodies that attack the baby's platelets causing the thrombocytopenia.  The baby has one platelet antigen from the mom, which the mom recognizes as "self" and one from the father that is of the opposite type, which triggers the immune response.


Maternal Immune Response
The chart to the left shows how our bodies produce a much stronger secondary immune response after being vaccinated.  With NAIT, the first baby essentially vaccinates the mother against her husband's foreign platelet type.  Her body is then well equipped to attack in any future pregnancies.  Treatments like IVIG and Prednisone are used to suppress and protect against the maternal immune response.  Our doctors, Dr. Kwak-Kim and the late Dr. Beer, felt strongly that starting treatment prior to the initiation of a strong secondary response was key in having a better chance to control the maternal immune response with less intervention.  We began treatment at around five weeks gestation, which is when the heart begins beating.

NOTE and DISCLAIMER: My wife and I are not doctors.  We are just parents who hope to share information we learned from reading and consulting with many wonderful doctors. 

 

The information and reference materials contained in this site are intended solely for the informational purposes of the reader and should not be considered medical advice and is not intended to replace consultation with a qualified medical professional. This site is only intended to possibly help you when you are discussing NAIT with the your own physician(s).