Elsbury Ryland Family
Gloucestershire,
England, UK
Our NAIT Story
After a straightforward pregnancy – albeit with gestational diabetes – my waters broke a week early at home. It was a few days before Cali arrived, in the end with the help of an induction. It almost had to be an emergency C-section but luckily things started to progress and he was born naturally at 9:30am without any additional intervention. Everything seemed normal when he was born, with the exception of a lot of bruising which the midwives initially put down to the trauma and congestion of the birth as it was a long labour. After a few hours we were allowed back onto the maternity ward where we passed all of the checks and thought we would be going home that evening.
Later that afternoon, one of the midwives came to do a check on Cali and mentioned that she wasn’t happy with the level of petechiae (pinpoint bruising) he had, and although it probably wasn’t anything to worry about, she was going to ask her manager to have a look. The manager came and said she wasn’t happy either and was going to ask her boss to check him over and ordered a blood test. At 11pm, with everything packed up ready to go home, the paediatric consultant came into our room to tell us that Cali’s blood results showed his platelets were 19k, and a normal level should be between 250-400k. This meant he was unable to clot his own blood and he needed to be taken to NICU straight away. The next few hours were a complete blur for us as he was rushed downstairs to the intensive care unit. When we arrived, he was hooked up to different machines to measure his vital signs and was given a brain scan to check if he had bled into his brain which we were warned could cause huge complications for him. He needed a platelet transfusion as soon as possible to stabilise him. The consultant explained that there were a few different reasons that this could have happened and they would have to carry out different tests to determine the cause.
Encouraged to get some rest by the NICU staff, we left him in ICU at 4am and had to return to the maternity ward without our baby, which was the most horrendous feeling. Unable to sleep, we returned to NICU at 6am where the consultant explained they had blue lighted platelets from a blood bank in Birmingham and were preparing to give him a transfusion through a cannula in his arm. His platelets had dropped from 19 to 12. The consultant explained because he was newborn and there was swelling from birth, he couldn’t tell from his brain scan if he’d had an ICH (intracranial haemorrhage), but they would repeat the test in 24 hours. The transfusion went ahead and Cali’s platelets rose to 75, still not a normal level but much safer. We had to call our families and explain everything that had happened and why we had not come home as planned.
Cali spent the next 2 days in NICU and then was allowed to come up with us on the maternity ward where the amazing TC nurses (transitional care nurses from NICU) came to monitor him every 4 hours. We were told to be vigilant for signs of bleeding in his gums or nose, when we changed his nappy or for any additional bruising.
The next hurdle was jaundice. As Cali’s body broke down his bruising, his bilirubin levels rose dramatically. The NICU team brought a blue light incubator into our room and Cali had to stay under blue light treatment for as much of the day as possible. When the doctors discovered this wasn’t working quickly enough, he also had to be placed on a biliblanket so that he was getting double blue light treatment and it could continue even when he was out of his incubator for feeds.
The consultant chased our blood results and confirmed that Cali had neonatal alloimmune thrombocytopenia. He explained that my partner had normal positive platelets and I had rare negative platelets, probably due to two recessive genes my parents carried. Cali had positive platelets, like his Dad, and where his blood had passed through the umbilical cord and into me, my body had treated these platelets as dangerous foreign objects and made antibodies to attack them. These antibodies then crossed back through the placenta and umbilical cord and into his body, destroying the platelets in his blood. The consultant explained that Cali would struggle with stabilising his levels on his own in the short term as a mother’s antibodies stay in their baby’s system for a few months. This usually offers a newborn baby protection, but in our case it was doing the exact opposite.
Our hospital had contacted the haematology team at Oxford for more guidance as it was a rare condition and they had more expertise in the area. Cali’s care was then led by these specialists but we were able to stay at our local hospital.
Unfortunately his platelets continued to drop and the next two weeks were filled with daily blood tests to check his platelet and jaundice levels. His tests would often clot and have to be repeated and his tiny feet were covered in needle marks from all his heel prick tests. He went on to have 2 further platelet transfusions with specialist negative platelets every time his platelet level dropped below 20. We were allowed home two weeks later but had to return every 24 hours for blood tests. This was then increased to every 48 hours. Cali had to return to NICU twice in that time for further platelet transfusions. On one of these visits, it took more than 7 attempts to insert a cannula into his tiny hand. I don’t think I will ever be able to forget the sound of his screams and the helplessness I felt in that moment.
Finally, a month after he was born, 4 platelet transfusions and 5 brain scans later, his platelet levels began to stabilise and we were able to have a week off between visits and we were finally discharged once we had travelled to Oxford to see the haematology team who had been leading his care. We were told we are in the 100% group, meaning any future pregnancies will definitely be affected – probably more severely than Cali as my body has already made the ‘antibody factory’ which will be ready to start the fight again as soon as we conceive. Any future pregnancies will require me to have weekly IVIG transfusions and an early delivery to give the baby the best chance possible. Although the treatment is invasive, it has a very high success rate.
We were so incredibly fortunate that Cali didn’t suffer any internal bleeding or brain damage and feel completely blessed to now have a happy and healthy 8 month old; we know others are not so lucky.
We will forever be grateful to the wonderful midwives and NICU staff at Gloucester hospital who provided the most outstanding care when we needed them most. So many professionals we have come across since (midwives, health visitors, GPs etc.) have never heard of NAIT and it’s so important to raise awareness of this condition so that future babies are better protected and there can be more understanding, funding and research into this area of foetal medicine.
Hannah Elsbury
