Guest article by Amy | Miracle Mumma
Three years ago, my son James was born at 30 weeks gestation with a rare blood disorder called ‘Neonatal Allo-Immune Thrombocytopaenia’ (NAIT). Basically, James inherited platelet antigens from my husband which were recognised by my body as foreign, and I made reactive antibodies which crossed the placenta and subsequently ‘attacked’ James’ platelets in-utero. Platelets are a component of the blood essential for clotting. Low platelet levels obviously cause bleeding into tissues and subsequent bruising, with severe cases causing irreversible intracranial haemorrhage (bleeding on the brain), resulting in long-term disability or death. This condition isn’t routinely screened for in pregnancy which means in order to diagnose, a baby has to be affected at birth, which can have serious consequences.
James was born extremely bruised and swollen with a petechial rash caused by broken capillary blood vessels. He was found to have a severely low platelet level which was labelled as life-threatening. He immediately received a transfusion but his levels didn’t rise as expected. This is when the doctors started testing for NAIT and discovered that James required specific platelets. Finding these rare platelets was a bigger task than expected — platelets have a short shelf life of 3 days and there were only a small number of matched donors in the country. Thankfully, a donor bag was sent over on ice from Melbourne immediately. They divided this one donor bag into three and gave James a transfusion as soon as they arrived. Over the next 24 hours he received all three transfusions which were enough to raise his platelets to a ‘normal’ level, but this also meant they had used the supply if they needed to transfuse again. They found another donor on the registry in Sydney and asked them to kindly donate that day in case they were required, and they were again sent over on ice immediately. Thankfully, James continued to thrive from this day forward, and despite suffering a small grade 1 brain bleed, he has had no long-lasting complications from this condition.
They say the recurrence rate of NAIT is very high (88-97%) with progressively more severe manifestations in subsequent pregnancies. Thankfully, when we found out we were pregnant with our second child, we were aware of the condition and a plan for treatment was immediately put in place. Every week from 19 weeks pregnant until delivery, I received 5 precious bottles of Intragam (immunoglobulin), a product made from human plasma & obtained from approximately 1000 voluntary blood donors. The doctor explained that these antibodies flood my blood and ‘trick’ my body to stop creating the specific antibodies which attack the baby’s platelets. Each infusion cost almost $8,000, a total of approximately $130K for the pregnancy to keep my baby safe and protected in the womb. This process included countless needles, a weekly 5-hour hospital admission and close monitoring of baby to check for any undesired effects in utero. And while the treatment is aimed at preventing my body’s immune system from attacking our baby’s platelets, there was still a small chance it wouldn’t work & our baby would require rare platelets at birth, as James did.
Eventually, after an anxious high-risk pregnancy, it was time to deliver our baby boy. On 6th May 2019, Jack Henry Purling arrived at 34+5 weeks gestation weighing 2280g and 44cm long, after Mum developed pre-eclampsia. His delivery was via planned c-section (due to the risk of internal bleeding with labour and contractions), and thankfully he didn’t have any immediate signs of NAIT. His first platelet level came back lower than normal but not low enough to require treatment – it felt as though everyone involved in our care could finally breathe a sigh of relief! Over the next 24 hours however, his levels started to drop quickly, and his blood work indicated that his platelets were being destroyed and his body was trying hard to compensate. It was decided that Jack would receive a platelet transfusion, again from a kind-hearted stranger who had been called and asked to donate especially for Jack in the days prior to his delivery. After his transfusion, Jack’s platelet levels slowly started to stabilise, and after a week stay in the nursery, he was able to come home with us on the hospital’s early discharge program.
We will never be able to truly express our thanks to the team of nurses, midwives and doctors at the Women’s & Children’s Hospital in Adelaide for their care, compassion and dedication during a frightening time for us. Over the duration of the pregnancy, birth and nursery stay, we formed a support network within those hospital walls who became our family and our real-life superheroes. They invested so much of themselves into our journey while making us feel safe and reassured… and for this we will forever be grateful. It truly is a place where miracles happen every day.
And as I sit here writing this with tears streaming down my face, surrounded by my two precious little NAIT miracles, it is not lost on me how our story could have been completely different. I want to say a personal thank you to all those who donate blood, from the very bottom of my heart. None of this would have been possible if it weren’t for the generous and selfless donors who took their time to save a life – and not just any life, but our son’s lives. Our difficult journey has been made so much brighter by the goodness of people we have never met and we will forever be in their debt.
You do not have to be rich to be generous.