31/03/2016
Her sweet survivors. Strong. Resilient. Absolutely adorable.
Love you all.
And for those who don't know, 14 facts to share (with help from those who know it well) for NAIT awareness week:
NAIT awareness week fact #1. A quick explanation of NAIT (neonatal alloimmune thrombocytopenia): A mother and father with differing HPA (human platelet antigen, like a blood type) types get pregnant (in our case, I have HPA-1b/b (rare) and Andrew is HPA-1a/a (common)) and then the baby gets one antigen type from each parent (our kids are HPA-1a/b). The mother's immune system then recognizes the antigen from dad as a foreign body and begins to attack the baby, resulting in low platelet counts (thrombocytopenia) which can lead to intracranial hemorrhage, stroke, bruising, petechiae and even death.
NAIT awareness week fact #2. NAIT is the leading cause of severe thrombocytopenia and intracranial hemorrhage in term infants.
NAIT awareness week fact #3. A woman can be in the 50% or 100% group of having NAIT. Based on the mom and dad's incompatibility, NAIT may occur in every pregnancy (like me) and you know that you will need treatment each time, this is the 100% group. If in the 50% group, you may or may not develop NAIT with each pregnancy and would need an amniocentesis with each pregnancy to determine if the baby and mom's hpa's are compatible or not
NAIT awareness week fact #4. Out of the known 26 types of human platelet antigens (like a blood type), 80% of NAIT cases are from a mother making antibodies to HPA-1a, 15% are antibodies to HPA-5b and 5% are antibodies to the other antigens. Incompatibility occurs in 1:350 pregnancies and anywhere from 1:600 to 1:1500 developing antibodies and, therefore, NAIT. Our incompatibility is more rare on both HPA-1 and HPA-15.
NAIT awareness week fact #5. In the United states, about 98% of the population has HPA-1a, so the remaining 2% that are women may be at risk of developing NAIT at any time (more, if you consider the other incompatibilities that are possible). (unfortunately so little research has been done and so little is known about NAIT, any numbers I post are just best guesses.)
NAIT awareness week fact #6. No country in the world currently offers prenatal testing for NAIT.
NAIT awareness week fact #7. One bag of IVIG is made from thousands of plasma donors (hence why it is so important for people to donate plasma!!!) Platelets are the most needed donation, however, as they only have a shelf life of 1 week (many NAIT babies receive platelets in utero or shortly after birth to help with low counts). Dylan had 24 platelet transfusions, 3 rounds of IVIG plus RBC transfusions in the 3 weeks he spent in the NICU. Luckily because of treatment, Ryan didn't need any intervention after birth.
NAIT awareness week fact #8. Each of my IVIG treatments cost about $30,000 per treatment and were about 8-10 hour days hooked up to an IV. I received treatment twice a week starting at 12 weeks of pregnancy and was actually nearing the end of my last treatment (about 1 hour left) when I went into labor with Ryan.
NAIT awareness week fact #9. A woman can experience a 'perfect pregnancy' and not find out about NAIT until after delivery (like I did with Dylan).
NAIT awareness week fact #10. A normal platelet count in a newborn is 150,000-400,000. Dylan had a count of 36,000 getting as low as 5,000. Ryan had 168,000 at birth with treatment. Anything below 50,000 is very risky and could result in a bleed.
NAIT awareness week fact #11. Signs of NAIT in a neonate are petechiae, low platelet counts, intracranial hemorrhage, bruising and intrauterine stroke.
NAIT awareness week fact #12. Without treatment, NAIT will most likely be worse with each subsequent pregnancy. The body tends to 'forget' about NAIT in between pregnancies (the antibodies die off) but when the mother gets pregnant again, the antibodies seem to kick in much faster (kind of like muscle memory)).
NAIT awareness week fact #13. Naitbabies (naitbabies.org) is the only organization in the world for NAIT awareness and is based in England.
NAIT awareness week fact #14. Prophylix Pharma in Norway is currently developing a prophylactic treatment against NAIT thru the Profnait program and is the only company in the world doing so.
