Sam’s story

My name is Kerry. Before September 2018, I had absolutely no idea I was a carrier of haemophilia type A.

I gave birth to my second child, Sam, on 13 September 2018. Our initial joy was short lived as Sam started to struggle with his breathing about an hour after birth. His sats were dramatically dropping and he was intubated. Doctors bravely gave us the bad news that they had no idea what was causing it and it was very likely that he may not survive. His lungs were filling with fluid and they couldn’t figure out why. We braced ourselves for the worst, but hoped for the best.

I prayed for a miracle for my baby. A few hours passed and we were informed that a heart doctor had arrived from a nearby hospital to assess Sam. She carried out an echo scan, and confirmed he had a congenital heart defect called Total Anomaly Pulmonary Venus Return (TAPVR). Which translates that the 4 veins which were supposed to be connected to his heart to carry oxygenated blood back to his heart, were not connected and he was kept alive by a tiny hole in the middle of his heart which was mixing the blood together. He needed surgery immediately.

He was transferred to a nearby hospital where he had a seven hour open heart surgery when he was 11 hours old. I remained at the hospital where he was delivered as I had had an emergency Caesarean section.

Sam spent 8 days following his surgery on PICU at the Freeman hospital in Newcastle. He received excellent care. In the process the nurses were concerned about his coagulation levels. He was given heparin during his surgery and they were constantly checking his levels afterwards to make sure they went back up. But they never did.

He was given a plasma infusion and this increased his levels slightly, but not to where they would expect. They told me he ‘oozed’ slightly during surgery and would send a sample to the haemophilia team for analysis.

A few days later I received a call to confirm that Sam had mild haemophilia A. I had no clue what that meant and relied greatly on the fantastic haemophilia team at the RVI in Newcastle to educate me.

Sam recovered well from his heart surgery and is thankfully doing well now. I have since learned what I need to with regards to his haemophilia. I’m so grateful his condition is mild, and dread to think what would have happened during his heart surgery had it been moderate or severe.

The team at the RVI are now carrying out tests on family members, and have already diagnosed my nephew as a suffer, and my mother and sister as carriers.

It’s so important that both carriers and suffers are aware they have this condition, and I am just pleased we are now aware of it – all thanks to our heart hero Sam