Neonatal Alloimmune Thrombocytopenia / NAIT Parent Home Page
We are NAIT parents ourselves and created this website to try to help others. Not all doctors are treating Neonatal Alloimmune Thrombocytopenia (NAIT) with equal success, and we feel very fortunate to have found ones that treated NAIT using what we see as a safer approach and achieving better results than others who unwisely wait until as long as halfway (20 weeks) through a NAIT pregnancy to treat. Our goal is to provide information, hope and answers to other NAIT parents, friends and relatives. While NAIT is a very serious and potentially fatal disease, with the proper treatment good outcomes are frequently achieved and our family is living proof. If your doctor is telling you otherwise, they are not well informed as we know hundreds of NAIT parents who have had good outcomes in treated pregnancies. If you have a newborn baby that is severely thrombocytopenic, NAIT is the most likely cause and please know that your baby should be completely fine soon as long as there has been no serious bleeding and the proper treatment is used. Please see our NAIT Treatment page for more information on treatment approaches that can work better than others, and vist our Contact Us page to ask questions or request research information, share your story, or if your newborn baby is severely thromboctyopenic and they are not recommending using the mother's platelets for transfusions or trying intravenous immunoglobulins (IVIG) to help boost the count.
Our background is that we are blessed to be the parents of three wonderful NAIT children. Our fistborn son, Caleb, was born with a severely thrombocytopenic platelet count of 20,000 platelets per cubic milliliter. 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 homozygous 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 nearly half the NAIT babies were already severely thrombocytopenic 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 protégé, 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. If you are a NAIT parent and your doctor is recommending starting treatment half-way through the pregnancy at 20 weeks, or 12 weeks with prior intracranial hemorrhage (ICH), we encourage you to proactively request or seek out more preventative and effective treatment. If they are recommending invasive procedures such as Fetal Blood Sampling (FBS) or Percutaneous Umbilical cord Blood Sampling (PUBS) their has long been much data and research showing on average they do much more harm than good and most doctors around the world have thankfully abandoned their use in NAIT. If your doctors are not aware of this, even if they or others tell you they are "experts", please visit our Contact Us page and request more information so you can better understand the risks as they are higher with NAIT than in non-NAIT procedures due to the higher risk of bleeding, plus the known risk of triggering a stronger immune reponse.
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 on our Contact Us page 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 for all of your support! Laura and I have been humbled by the thousands of visitors we get each year, many taking the time to contact us. Together we can make a difference -- there should be no ICHs in a treated NAIT pregnancy. Please help promote earlier treatment and pressure the old-guard doctors to treat earlier to avoid more ICHs. They are choosing to treat later knowing more babies will have ICHs as a result somehow justifying it by saying they will not overuse as much of a relatively benign drug, IVIG. Please help us put an end to this era. More NAIT babies need to be born with normal counts like ours!
| 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 quote from the late Dr. Alan Beer when I emailed him regarding what some considered the "standard" NAIT treatment 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 exact publication starting Dr. Beer's 100% survival rate, I also know of none that contradicts it and believe that was Dr. Beer's experience. 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. We agree with Dr. Beer that NAIT parents should accept no lesser protocol when possible, which includes ones from doctors saying to wait until 20 weeks to treat. Some of the doctors who choose this time frame still have ICHs in their treated pregnancy data and about 20% still born severely thrombocytopenic. While they may choose to settle for those numbers, many NAIT parents, including us, do not. We feel any group, doctor or parent recommending doctors who use 20 week treatment starts with NAIT when doctors treating earlier can be found are either uniformed of the better approach, misinformed or possibly opting for preserving IVIG over achieving higher platelet counts at birth, and we are happy to share the data to support this if you contact us. 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 common type.) | Platelet Image 
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