Monday, July 2, 2012

Neonatal Alloimmune Thrombocytopenia (NAIT)

Strokes in utero from Neonatal Alloimmune Thrombocytopenia resulting in massive brain damage.

Cognitive delay, speech delays and epilepsy.

Blood test and CT and MRI scans of the brain and therapeutic evaluations

Speech therapy, OT PT special education since 4 weeks of age. Also horseback riding, social classes, behavior modification and medication for the seizures

Early Intervention, NYU Comprehensive Epilepsy Clinic and school district resources.

Personal Story

Chris was born term after 2 days of labor and 3 hours of pushing he had to have an emergency csection. Immediately after birth they knew something was wrong. Chris had a swollen head and petechial hemorrhages all over his body. He also had bruising from the birth.

They tested his blood and found that he had low platelets. They found that we had a condition that was called NAIT neonatal alloimmune thrombocytopenia. Basically it is a condition that is not screened for anywhere in the world except for Norway. It is where the mothers and fathers platelet "type" do not match and mom makes antibodies against the baby's platelets.  Her body sees the platelets as an invader.
Chris was not expected to live much past birth because of his brain damage. We were given a week, then when he lived past that, a month and then a year. They expected him not to walk or talk or even recognize us as his parents.

Ironically (through massive therapy) Chris hit all his milestones for his first year ON TIME!!!!  It wasn't until he was 2 years old that we realized that even though he could speak he had major trouble retrieving words. To this day he is very quiet and has to be coaxed to speak. He does however walk, talk, run, jump, swim, hike and rock climb, yes rock climb. He will never be in a typical school although he loves school and has made friends on his own. He will always be in a special education classroom but it is fine with us. Chris is a happy adorable 11 year old. He is a true miracle and overcame so much and blew his prognosis out of the water! We love him so much.

His brother was treated while I was pregnant and fortunately was born okay. Unfortunately this did not have to happen to Chris. Blood testing of mom and dad BEFORE getting pregnant would determine those at risk for a NAIT pregnancy. It has become a goal of mine to provide support for other families and push for screening and make it part of prenatal testing. NAIT can be treated and children do not have to be born with brain damage. I started the yahoo support group in 2002 and it has taken off!!! NAIT is now in one in every 500 Caucasian births and statistics say it is about 1-600 world wide in every population. We feel it is grossly under diagnosed since not all cases are severe and not all are with the first child. Some people have a 50% chance of NAIT while others have 100% due to genetics.

Contributed by MOM Stephanie Volpe

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