Louise Gill, Mum to –
Rory (Age 6 – 22k platelets – 2 ICH’s/ 2 transfusions/ 2 IVIG infusions)
Matthew (Age 4 – treated pregnancy – IVIG 1g/KG from 20wks – Fetal Blood Sampling at 28wks – Born with 155k Platelets at 36wks via Caesarean Section)
Daniel James (Age 22 months – treated pregnancy IVIG 1g/KG from 20wks – Fetal Blood Sampling at 30wks – Born with 170k Platelets at 37wks via Caesarean Section)
Scotland/ Republic of Ireland
Our NAIT StoryNearly 7 years ago I delivered my first son, a vaginal birth – assisted with Ventouse (suction). Rory was injured during this delivery, far more seriously than I was let to believe by Doctors who actually had me convinced he had miraculously made it through his rough and painful delivery unharmed.
My story was already featured on Naitbabies.org, but I had it removed until I could tell the truth. The truth I didn’t know until I decided I felt ready to read Rory’s medical records and find out what really happened..
I remember bits and pieces of his birth, and certain words the Haematologist said, when he finally came to talk to me.. those words were “suspected bleed brain” and “swelling on the brain”. Rory’s father and I finally got a name of what was causing these things, Neonatal Alloimmune Thrombocytopenia, but we never questioned ANY of the doctor’s abilities to treat our little son. So, I took Rory home finally, thinking all was well and vowing never to get pregnant again as we were told that any other children we had would be affected.But of course, I fell pregnant, with my second son Matthew. I immediately panicked because of the terrifying experience with Rory, and was given an emergency appointment with our haematologist and send for an early ultrasound. All was well, and I was sent to the National Maternity Hospital.
As Matthews pregnancy progressed I began IVIG at 20wks and I was told, not given a choice, that I was delivering 5 hours from home in the NMT. I agreed as I had NO choice in the matter, and after fetal blood sampling which showed the IVIG was working really well, we set a date for a caesarean section. I was told never to have more children. Matthew was born healthy.
Of course I fell pregnant again, with Daniel James. This was another treated pregnancy of course, IVIG from 20wks and another caesarean section.. All was going well, I had decided I was going to fight for my right to deliver locally, after all, they had looked after Rory who had been a NAIT baby requiring platelets, so what was the problem! The paediatrian came to talk with me, and told me I could not delivery locally as my first son had a brain bleed…
I didn’t believe him, I was never told an actual bleed had occured, if there had been a bleed wouldn’t Rory have had repeat MRI scans to check there hadn’t been any damage? So I put that to the side, and concentrated on my pregnancy. I eventually delivered locally to a healthy baby boy via caesarean section, in our local hospital!Nearly 2 years have passed since I delivered Daniel James and since working with the ladies at Naitbabies.org, and the Yahoo/ Facebook Support Groups, those words the paediatrician said to me started to eat away at me inside.. I wanted to know for sure. And I knew I had the support around me to deal with whatever I might find..
Obtaining Rory’s medical records from 6 years ago was very simple, a much quicker process than I thought. A quick flick through them and I saw nothing that stood out. Then later when I sat down to read the entire notes, from start to finish, I saw it there in black and white.
Rory had 2 bleeds. I felt faint, why were we not told? and WHY no follow up care. I know babys can have insignificant bleeds, but still, shoudnt these things be double. TRIPLE! Checked. This may explain a lot of things that I was often wondered about with Rory, but how will I ever know if those things are just the way he is? or the result of a brain bleed.
I am completely relieved he is well, and alive. He met the majority of his milestones, he does not appear to have any learning difficulties so far but he had issues with speech for the first 2 years of his life. He did not speak at all. But I will be watching him like a hawk, as long as he lets me.
This is why I changed my story, if anyone reading this, EVER questions, or wonders anything a doctor has said. PLEASE get a second opinion, or order a copy of those medical records. It is your right to question anything regarding the care of your pregnancy, or your children. If I had known Rory had 2 bleeds, I’d have insisted I started my treatments far earlier, and more aggressively. All cases of NAIT should be treated as worst case senario.
I thank you for reading, I’m a mum of 3 little lucky stars, and I am immensely grateful for the doctors who treated us and kept my boys safe. We’ll keep fighting until NAIT is screened for routinely in pregnancy, and one day I do believe it will be. More and more people are coming forward, and it makes me believe 100% that this disease is nowhere near as rare as some doctors claim.
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