Angela and Robert Farr
USA

Our NAIT story

The story begins with a miscarriage prior to the first healthy, natural pregnancy followed by midwives where I even felt guilty after having an epidural. Olajuwan was delivered vaginally and respiratory resuscitated twice after attempting to nurse twice, turning blue and flaccid. After the second time the NICU team flooded the room and took him away in a whirlwind. I laid helplessly watching and crying “What’s wrong with my baby?!” as I had to deliver the placenta and be stitched up from tearing. Once I finally got to the NICU hours later they had no idea what was wrong with him. He laid in the bed warmer full of wires & monitors. After 3 days of this he showed petechiae and more tests were performed to find a platelet count of 32k (normal range is between 150-450k) and a scan showed a bleed in his brain.

They tested both parents and he had 2 platelet transfusions. After several ultrasounds of his head and several blood draws later he was discharged from NICU at 6 days old. He was followed by haematology at Children’s hospital with frequent needle sticks to check his platelets during the following 3 months. Today he suffers from Autism, Arnold Chiari malformation, ear tubes remain at age 13, and a history of misshaped optical discs. He is overall a healthy boy & doing well with treatment.

Baby #2 was conceived and diagnosed at 14 weeks at my triple screen doctor, I spent those 14 weeks telling everyone about what had happened to my son and the only response I got was “Was he premature?” No, he was 39 weeks. This doctor immediately took mine and my husband’s blood and sent it to the Blood Bank of Wisconsin and confirmed we were in the 100% group for NAIT. What a blow! He arranged for me to receive care at the high risk hospital where I felt everything was medical. I was going to go to a natural hospital for a water birth and a possible home delivery. It was hard for me to understand that I’d just become a medical case and I never even took Tylenol with my first! So, at 16 weeks, I received my PICC & started IVIG. The first brand gave me aseptic meningitis within hours and I was in ER while 34mg of morphine never touched my pain, the pressure and swelling in my brain was unbearable; I rocked, groaned, vomited, with halos and light and sound sensitivities. They performed 2 lumbar punctures that produced nothing as I was so dehydrated from the treatment and hadn’t been drinking. I was admitted and seen by haematologist, where they found my platelets to be low, and I never had an explanation for this. He changed my IVIG to a brand that weeks later caused my kidneys to start shutting down and I found myself in the hospital once again. Surrounded by MFM’s (mad medical scientists as I called them) my IVIG was changed once again…this time it seemed that I was tolerating the new brand, until 32 weeks when they doubled my dose per protocol…I felt horribly sick but ignored it as I had grown used to being sick. During the weekend and Monday the fetal kick counts decreased and I was given a non stress test which showed one decel. I was discharged because rest of the test was ok.
On Thursday I went in for my infusion as routine as it had come, they were beginning my IVIG when I mentioned they had forgotten to draw my weekly blood. The results were not good, I had developed HELLP syndrome and the nurses were throwing bags of magnesium up on my IV and giving me shots to mature the babies lungs, and doc came in to tell me I wasn’t going home today and I would have a baby within 24 hours! WHAT?!?!?! I was terrified for baby, for the surgery, everything. Quinlan came via c section at 33 weeks and was admitted to NICU, few minutes on CPAP, IV, and heart monitor. At 2 days old a NG tube was placed for her to receive nutrition. At 11 days old she was discharged and fine.

Before baby #3 we had 2 miscarriages at the beginning of 2014, within a 4 month period. They tested for reasons but everything came back negative. Baby #3 is currently on the way at 16 weeks along & preparing for IVIG treatments to start this week. Hopeful for a healthier, easier, and longer pregnancy with a healthy baby this time!

Angela Farr