"I felt overwhelmed watching my little boy while trying to support my wife" - Tom's story

Tom describes the experience of his son Rafferty being born with a rare blood condition seven weeks before his due date, as well as the acts of kindness they received from healthcare professionals along the way.

Rafferty’s story started on a Friday night. It was the Friday before the August bank holiday and we had gone out to meet friends before the weekend. Alice had been suffering from SPD (Symphysis Pubis Dysfunction) but this evening her pain seemed to be more severe and coming in waves.

A friend who was also pregnant at the time suggested that maybe we should start tracking the periods between these waves of pain and eventually thought we should get in touch with midwives. 11 am the next day Rafferty was born by c-section seven weeks before his due date and weighing just over 4 pounds.

When Rafferty was first born he was immediately taken through to a high dependency unit. When he was first examined by the registrar in this unit significant bruising was noticed on his skin. I remember standing alone and a nurse asking me if I was ok and if I’d like a hug. This extraordinary act of kindness and empathy will always stay with me.

It was later that day that I found out the expected reason for his bruising was a rare blood condition called Neonatal Alloimmune Thrombocytopenia where the interaction between Alice’s and Rafferty’s blood had led him to have extremely low platelet counts with the associated risk of internal bleeding. As this is not a common condition, we were fortunate that a hunch of the consultant working that day identified the issue and meant it was treated early. With hindsight, we know that every minute counted!

Rafferty had seven platelet transfusions, 2 transfusions of intravenous immunoglobulin and a full blood transfusion in the first four weeks of his life. He had blood tests taken from his heel almost hourly, had numerous canulars put into his body and regular brain scans. The results of every test were met with anxiety and hope as we waited to understand whether he had experienced any improvement in his platelet counts or if there had been any further internal bleeding.

Rafferty experienced a setback during his stay in the neonatal unit when he contracted sepsis from one of his many canulars. We had turned up in the morning as we always did for Alice to try and have an another go at getting him to feed but that day he seemed different. He was less interested than usual and seemed more sleepy and limp. We mentioned this to the nurse a few times and very soon afterwards he suffered a significant de-sat (a word that parents of premature children would be very familiar with). We were quickly escorted back to the intensive care unit feeling like we were back to stage one and hoping that he was going to make it through.

I remember at the time feeling completely overwhelmed by the situation as I watched my little boy be hooked up to more monitors while trying to support my wife too.

The nurses yet again showed endless amounts of care towards us. One nurse who had spent a lot of time with Rafferty came to see us to talk everything through and reassure us. She wasn’t working in Rafferty’s ward that day but had heard the news and rushed to see us. A small act that meant so very much.

Rafferty did make it through this set back and a week and a half later his platelet counts rose and stabilised. We left hospital a month after he was born and he is now a happy and healthy two year old.

I feel like we learnt a lot during our time in the neonatal unit and charities like Bliss provide invaluable services to neonatal units across the UK helping to ensure that babies like Rafferty are given the best chance in life whilst ensuring that parents like ourselves are also cared for and given the support we need.

Our tips for parents going through this experience would be to trust your instincts, stay away from Google (you are in the hands of incredibly experienced medical professionals who will tell you everything you need to know), you will be able to live without the machines for comfort and finally remember that things will get better.

Tom kindly nominated Bliss for his company BCLP's UK Charity of The Year. As part of their amazing continued support, BCLP are supporting our brand new virtual balloon race event!

Get involved ahead of World Prematurity Day by entering your virtual balloon today 🎈