‘My grandson Joe had his first operation at just six days old’
Jacqui Seymour (61) is a teacher and lives in Larne. She is married to Jim and has three children, Jonathan (37), Kerri (35) and Laura (34), and four grandchildren, Joe, Grace, Daniel (all four) and oneyear-old Dylan. Joe was born with hypoplastic left heart syndrome, which was diagnosed before he was born She says:
Joe is my first grandchild and he has just turned four. My other grandchildren, Grace and Daniel, are also four and Dylan was born about a year ago.
There has never been any kind of heart condition on either side of the family. My grandparents had heart attacks when they got older, but that was due to their age and lifestyle factors.
We have no idea where this came from, which is why I got involved with Chest, Heart and Stroke — they were doing a baby’s heart study and they even used Joe’s photo for fundraising — to try and find out where this comes from.
Kerri and William found out when she had a 20-week scan that there was a problem with Joe’s heart. The midwives attempted to measure the baby’s heart valve but had difficulty finding it during the scan.
At the time they thought there may have been an issue with the scanning equipment. Kerri was referred to see a con- sultant at the Royal Victoria Hospital in Belfast, where Joe was diagnosed with hypoplastic left heart syndrome before he was even born.
Essentially, the left side of his heart didn’t develop properly, so it can’t pump the blood around his body too well. This means the right side of his heart does all the work.
At least knowing things were going to be difficult let Kerri and William prepare themselves before Joe actually arrived.
He was born on a Monday and then taken over to a hospital in Birmingham for surgery just two days later.
He had his first operation at six days old and sailed through it. However, he got an infection that was quite serious, so he was in hospital for weeks — firstly in Birmingham and then at the Royal, until the medics could manage his condition.
He had another operation at nine months old and, again, he got an infection that nearly killed him. He was in Birmingham again and the hospital staff were really fastidious with his care — only consultants were allowed to tend the wound and change the dressing, and he was on antibiotics. He has to have more surgery next year.
While none of the operations will fix the problem with his heart, they make things a bit easier for Joe.
The thing that will really help him is a heart transplant, which won’t be done until he’s an adult. We’re hoping that by then there will be 3D printer hearts and he won’t have to wait for one.
Joe is grand. I mind him every Friday. My three eldest grandchildren were all born within a few months of each other. When they come over to visit, they run and jump around the place. Joe can’t keep up with them because he gets out of breath very quickly, but otherwise he can do all the usual things kids do such as drawing, painting and reading — just like everyone else.
He’s starting to slow down a bit now and sleeps longer than he used to. Sometimes he can go a bit grey because his heart can’t pump enough oxygen into his blood.
Next year’s surgery should help with that. It will be the biggest and most severe operation yet, and the toughest one for him to recover from. Since he’s four now, he knows what’s going on and I think that’s makes it more difficult for him.
It’s not the case that there’s no hope for Joe. If Kerri had been born with this condition, she would have been called a blue baby and would have been dead in five days. The medics couldn’t have done anything for her. Now, though, there is the technology to keep Joe alive until they can fix it.
That’s why I support and raise money for the Northern Ireland Chest Heart and Stroke. It’s a local charity, so all the money raised stays in Northern Ireland.
Everything it does is for people here, so that’s why we’re all doing the pyjama walk. Kerri and I will be doing it with Joe in the buggy.”
❝ Chest Heart and Stroke’s a local charity, so all the money stays in Northern Ireland