My Miracle: Ben with Coarctation of the Aorta (CoA), Bicuspid Valve, Aortic Stenosis and Ventricular Septal Defect(VSD)

England

I believe in miracles because I have one, he was born at the beginning of July 2008, five weeks early. However, just 2 weeks before I was offered another termination, I’d been asked at every scan I’d gone to and I went to a lot. It was when I went for my 12 week scan that they discovered he had heart defects.

Two years before conceiving Ben I was told the likelihood of me getting pregnant again was very slim!

When the doctors found out that I was pregnant, they gave me odds of 100,000 to 1 that I could carry him past 12 weeks mark. I had already lost three in previous years (as I have Lupus and it sees the baby as a parasite). When I reached 12 weeks the odds got better down to 10,000 – 1.

The day Ben was born was quite traumatic to say the least, his dad and I had split up that morning, and I had gone for a lie down which is when my waters broke. The nerves kicked in, would I make it to St Thomas’ in time, would he survive. I did and Ben did. They worked on him in the corner of the room and when he finally let out a little moan I was overjoyed, until that moment time had stood still.

He was taken to NICU, it was quite scary to see him hooked up to all kinds of bleeping machines, scarier still when they start going off, but the staff there were absolutely fantastic, they explained everything to me and I felt that he was in the safest hands in the world.

Ben was born with Coarctation of the Aorta (CoA), Bicuspid Valve, Aortic Stenosis, a small hole in heart (ventricular septal defect [VSD]), a 4 in 6 murmur. I was told he was a rare case which makes him even more of a miracle to me.

At 11 days old he was taken down to theatre for surgery, the risks were the same if he didn’t have surgery, I’m not religious but I sat in that corridor and prayed. They wheeled him past me 5 hours later on his way to PICU, feeling so relieved that he had made it. I am thankful to his surgeon Mr Austin, without him Ben wouldn’t be here today.

Bens now 21 months, he will need further help and has regular check ups. There has been a few scary moments but if you saw him you wouldn’t believe anything was wrong, he has his ‘angel wing scar’ that goes from under hiss arm to the centre of his back.

His Ventricular Septal Defect closed by itself when Ben was 14 months old, amazing, just like my little miracle Ben.

Wrote by Sandra James
May 2010

Sandra James has kindly given CHD-UK permission to use the photographs on this page.