Like most first time mums Sian Price was looking forward to the birth of her first child. She’d had a normal pregnancy and everything had been going to plan. But after an emergency C-section on the 1st of November 2009, their beautiful little boy Evan did not seem quite right.
“He was blue in appearance and didn’t seem interested in feeding at all” said Sian. After initial tests, it was clear that Evan had low levels of oxygen in his blood and that something was seriously wrong. Further tests were needed to discover what the problem was. After what felt like hours, Consultant Paediatric Cardiologist Dr Obed Onuzo spoke with Sian’s husband before going to tell Sian that Evan had Transposition of the Great Arteries and would need open heart surgery.
“It felt like my whole world was falling apart” said Sian. “This had been a normal pregnancy. Nothing had showed up on the scans and there was no family history of heart problems. I had never heard of the condition. It was a total shock”.
Very quickly a plan was put into action and a team from the Paediatric Cardiac Service came over from Bristol. As paediatric open heart surgery is not performed in Wales, Evan had to be transferred to the Bristol Royal Hospital for Children. Sian said “Dr Obed Onuzo was very compassionate. He explained everything in lay man’s terms and told me that essentially the plumbing of Evan’s heart was wrong and that his arteries had to be switched. What made things difficult was that as I’d had a C-section I had to remain in Cardiff to recover myself”. For the next 3 agonising days Sian would have to rely on updates from her husband and family.
In Bristol little Evan was on 24hr life support and at 9 days old had his major operation. The wait whilst Evan was in surgery was unbearable and later in PICU (paediatric intensive care unit) all the family could do was hope Evan would recover. The operation was successful and after just over a week he was well enough to be transferred to the Cardiac Ward in Bristol. After a further week he returned to Noah’s Ark Children’s Hospital for Wales where he would remain for a further 8 days before the family were told they could go home.
“To be going home with Evan was amazing but it was also very scary. There was a huge responsibility on us without the experts around” said Sian. They had their son back but they also had an arm full of medication that they needed to give him. Whilst at the Children’s Hospital for Wales, Evan was diagnosed with supraventricular tachycardia, a heartbeat irregularity. The doctors brought the situation under control with medication. Evan’s parents were given stethoscope training to check his heart rate several times a day for the first year of his life. “The hospital was a huge support for us even after we had gone home. We knew we could call if we were worried at all. The whole team was amazing. It was down to the quick diagnosis at birth, and the collaborative working between the Cardiff and Bristol teams that means Evan is here today” said Sian.
Before his first birthday Evan came off all his medication and now enjoys a typical 5 year old child’s life. “Evan has annual check-ups but everyone is delighted with his recovery. He knows he had a “baddy heart” and there will be a lot we need to explain to him as he grows up, but his case is an example of how the surgery should be done; he has had very few side effects. When we tell people at school who didn’t know us before his treatment they can’t believe what Evan has been through: he’s such a normal little 5 year old boy.”
Sian and her family have shown their appreciation to staff at the hospital by regularly sending photos and updates to those involved in his care as well as fundraising for the Noah’s Ark Charity.
When Sian’s employer Finance Wales asked staff which charity they’d like to nominate for fundraising, Sian knew exactly who she felt deserved the money. “They saved our son’s life. I was so delighted when my colleagues voted to support the Noah’s Ark Charity. Together we have raised over £4,000 which will go towards vital equipment for the hospital. I think it’s brilliant that Finance Wales supports fundraising for charitable causes as part of its responsible business strategy”.
