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Rare Diseases February 2019

How NAIT changed our lives forever

During my pregnancy, I was treated like every other expectant mum and everything was normal, or so we thought. At exactly 40 week, I went into labour but ended up having to have an emergency C-section. Isabelle was born a healthy 6lb 11oz. 


Over the next few weeks, however, we began noticing things weren’t right. After some tests, it was discovered that Isabelle had suffered a huge bleed in her brain and would be disabled for life. When she was a year old, we were tested for the platelet disorder, ‘Neonatal alloimmune thrombocytopenia’ (NAIT). The results came back positive. My partner and I  were incompatible with our platelets and this caused my body to fight against my own baby. NAIT had caused her brain damage and the tests showed it would do the same in every future pregnancy.

Isabelle is seven years old now. She is severely poor-sighted, has cerebral palsy, epilepsy and is tube fed. She attends a special school and is slowly learning to walk. Despite all this she is a happy, determined little girl and is making progress constantly. 

After our NAIT diagnosis I found Naitbabies. Here I learned about treatment. With support from Naitbabies and my doctors we decided to have another child. During this pregnancy I received weekly IVIG infusions and daily steroids. Daniel was born healthy via planned C-section at 32 weeks with a normal platelet count of 275k. He is now a happy, boisterous four year old 

Treatment for NAIT works. It should be screened for in every pregnancy and treated.

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