A positive outlook
Despite her initial shock at finding out that her son Ollie has a rare heart condition, Caroline Mutton says she now takes each day at a time and is optimistic about his future under the care of Harefield Hospital.
“I have handed my son’s heart over to Harefield and know that he is getting the best possible care from a specialist team led by consultant paediatric cardiologist Dr Rodney Franklin," Caroline says.
“His congenital heart disease is so complex that it is always with us, but he has regular checks at Harefield, and I can speak to Dr Franklin anytime I have a concern, which is very reassuring.”
Ollie, now 18 months, was born at Watford General Hospital weighing 7lb 8oz. It was a fast and furious birth, and he had a brief stay in intensive care to clear his airways, but other than that there were no complications.
A heart murmur was picked up when he was two days old, but Caroline was told that this was very common and probably caused by an open duct that should close within two weeks. Further heart tests came back normal and Caroline and Ollie were sent home when he was five days old.
Says Caroline: “Ollie was not feeding properly - which was a concern and still is to this day - but it was not until he was three weeks old that I found out he had a life-threatening heart condition.
“At two weeks he had an appointment at Watford General. The heart murmur was still there, so he was referred to Dr Emmanuel Quist-Therson’s murmur clinic at Watford the following week.”
Tests reveal complex problems
At this appointment, Ollie’s heart was scanned and a complex set of problems were identified. His two pumping chambers and great arteries were found to be in the opposite position to normal and he had a large hole between both the pumping chambers and filling chambers. In addition, he had a narrowing of the pulmonary artery leading from his heart and Ebstein’s malformation or a leaking valve on the left side of his heart.
“This news left me in a complete daze. I remember wondering how it was possible that he was still alive. Dr Quist-Therson explained that his unique set of heart defects were actually working together to allow his blood to circulate and protect his lungs.”
Ollie was immediately admitted to Watford General then transferred by ambulance to Royal Brompton Hospital where he spent 36 hours in intensive care and had tests to confirm the diagnosis under the direction of consultant paediatric cardiologist Dr Michael Rigby.
“Although it was initially intimidating to arrive at a large London hospital with a tiny baby, everything was explained to me clearly and the staff inspired confidence in me. Once Ollie had been monitored and was stable, he was transferred to Harefield Hospital as an outpatient," says Caroline.
“This was a great relief as we live in close by and it's made life much easier to have his appointments at Harefield. Royal Brompton cardiac liaison nurse Vicky Nash was a great support and spoke to colleagues at Harefield and also to Ollie’s health visitor. This helped make the handover very smooth.”
Leading a normal life
During the past 18 months, Ollie has suffered from respiratory and feeding problems and has taken diuretic medication to help him gain weight. Other than this he leads a normal life and is reaching his developmental milestones early.
“Because of the strain Ollie’s condition puts on his heart, it is likely that he will need a pacemaker in the future and he may have to undergo high-risk surgery. Although that is a frightening thought, I am optimistic about the future and have confidence that he is in safe and experienced hands at Harefield.”