Becky Robinson
England, UK

Ethan’s Story

My pregnancy had been fine. I’d been fit and healthy and really enjoyed being pregnant. All of my check-ups had gone well and when I went into labour in the early hours one Saturday, I was excited that in a few hours I would get to meet my baby.

My labour was pretty traumatic – I don’t remember much about it, but I do remember the room being filled with people and a doctor saying that the baby needed to come out … NOW! When I held him for the first time, it was the most incredible feeling. My boyfriend and I had a few minutes alone with our tiny 4lb 8oz little boy. It was overwhelming, yet I think we both knew at that point that something wasn’t quite right. Our son was covered in bruises and little tiny bright red spots (which we now know are called petechiae). His feet were almost black because of the bruises and he felt so fragile. Because he was so small, his dad had to pop out to the shops to get some smaller clothes for him as the newborn baby grows we had with us were way too big for him. It was when he was gone that they transferred our little boy to the special care unit. He was having trouble keeping warm and they wanted to put him in a hot cot.

In the SCBU, they took some blood from him while they tried to figure out why he had all these bruises.  His blood tests came back after a few hours and he had a dangerously low platelet count.  He was given a platelet transfusion.  The doctors were rather vague.  They weren’t sure why he had a low platelet count, and they began to do more tests on him to look for one of a number of diseases.  They told us that it was possible that I had picked up a virus or illness during pregnancy that had affected the baby’s blood.  One doctor also mentioned a platelet antibody issue.  He said this was very rare and unlikely to be the cause but they would treat him as though it was – just in case.  This decision saved our little boy’s life.  He was put on IV antibiotics too – again just in case it was an infection and he was monitored closely.  They took more blood from him, and blood from me and my boyfriend.  They also took an ultrasound scan of our baby’s head which showed signs of a bleed.  He was transferred to a more specialist unit in Southampton.

Our baby had scans and tests done on every major organ in his body. Nothing abnormal showed up. The only problems were with his platelet level and his brain. He continued to have platelet transfusions and antibiotics until he was about 2 weeks old. It was at this point that my blood results came back showing that I had antibodies that were incompatible with my boyfriend’s platelet group. We were given a diagnosis of NAIT. It was a bittersweet moment. We knew that with continued platelet transfusions, out little boy would get better, but we also knew that this incompatibility could affect our ability to have healthy children in the future. It was also difficult being told that the antibodies in my blood and attacked the platelets in my baby, and nearly killed him. How could my body have attacked my baby without me knowing? We were told that he was lucky to have survived the pregnancy and labour, but out little man was a fighter. We were given a leaflet: http://hospital.blood.co.uk/library/pdf/platelet_leaflet.pdf which helped us to understand what had happened. Without enough platelets, our baby’s blood couldn’t clot. He’d had a bleed in his head during pregnancy, and with a low platelet count it didn’t stop bleeding. He’d also had a second bleed in his head that happened during birth. Had they known about his condition before that point, he would’ve been born via c-section. While his platelet count was so low, he was at risk of having an internal bleed at any point. His bleeds were just in his head, but bleeds can occur in the stomach, lungs or other major organ.

The antibiotics were stopped and the platelet transfusions continued every few days. He was transferred back to our local hospital to continue with the transfusions. He needed to be given platelets that matched my platelets. The antibodies would continue to destroy the platelets his body was trying to make, but ones that were immune to the antibodies like mine would stay in his system a bit longer, and do their job. Eventually, all the antibodies would be used up and his own platelets would be able to survive. As he received more and more platelets, the bruises cleared up and the petechiae almost disappeared – they came back occasionally as his platelet count dropped just before he had a transfusion. Over the next 3 months, his platelet levels got better. The time between transfusions increased as the level of antibodies diminished until one day when he was 12 weeks old we got the call to say his platelet count had gone up without the help of a transfusion. That was an amazing day! He also had his head circumference measured every day to check it wasn’t growing abnormally fast. They wanted to make sure that there was no more bleeding in his head, and that the damage to his brain wasn’t causing excessive fluid build-up.

Ethan is now 15 months old. His platelet count is fine. His is still getting his head measured monthly, and his latest brain scan showed no signs of hydrocephalus. He is a little behind developmentally because of the damage to his brain, but is slowly meeting his milestones. He has a few problems with his eyes. His vision has been affected, but we regularly take him to see an ophthalmologist and with lots of stimulation with brightly coloured toys and lights, his eyes are improving as his brain is making new connections. I don’t think his eyesight will be perfect, but he can see and it is wonderful when he looks me in the eyes and smiles.

We came across this website: https://www.naitbabies.org/ which has helped us to realise that this condition isn’t as rare as we first thought. We also discovered the support group: http://health.groups.yahoo.com/group/NAIT/ which has been invaluable in helping us through a difficult time.

Becky.