Don’t desert the children

Don’t desert the children

A DOWNPATRICK mum of a child with a terminal heart condition has urged other parents to back a campaign to secure adequate paediatric cardiac surgery for local children.

Edwina Tumelty is fearful for the future of children with heart problems after a review of services recently concluded that the service for children in Northern Ireland is no longer sustainable.

Edwina knows the trauma parents face when their children suffer from heart problems after her third baby, Anna, was born five years ago with a rare congenital heart defect.

During her pregnancy, she said she was warned Anna may only survive for a few hours after birth due to the severity of her condition, hypoplastic left heart, which means only half of her heart developed.

Shortly after birth, Anna was whisked away from her parents to undergo her first of three potentially lifesaving operations and she continues to undergo extensive medical treatment to ensure her heart functions at its best.

Edwina says she dreads winters because of the toll the cold weather and flu season takes on Anna, who faces several hospital trips every year. She says the fact that parents like her will in the future have to bring their children to England for surgery is additional stress on a situation that is already very difficult.

She is now helping to promote a campaign that is seeking formal links with Our Lady’s Children’s Hospital in Dublin to ensure the longest journey children like Anna will face will be a 100-mile road trip to Dublin.

“When I found out at my 20-week pregnancy scan with Anna that she suffered from her heart condition I was offered to terminate the pregnancy,” she said.

“I was gunked and for the next few months and for the months after her birth it was like looking in a window at somebody else’s life.

“After she was born I held her for minutes before she was rushed to Clarke Clinic in the Royal Children’s Hospital. She was christened there before being packed off to Birmingham where she arrived within four hours of birth.”

After successfully undergoing three surgeries over four years, Anna is now on lifelong medication and requires regular check-ups and weekly blood tests.

Although her surgery was carried out in Birmingham, Edwina says the fact that there has been no permanent surgeon in Belfast since last year takes away a sense of security for parents like her who may need lifesaving operations for their children in the future.

“I can only imagine how anyone who is now pregnant with a baby who has a heart condition must feel because everything is so uncertain now,” she said.

“When parents have to go to England with their child for surgery they lose their support network. For us, we always had the security of knowing Belfast was there but that is no longer the case.

“Anna has the most serious heart condition there is and it is very worrying that surgery is no longer available locally.

“I am hoping other parents will join our campaign to secure services for our children in Dublin.”

Edwina has urged local people to support Heartbeat NI, which is lobbying for a formal liaison between Northern Ireland and Dublin for paediatric cardiac surgery.

Mr. Irwyn McKibben, from Heartbeat NI, said such a link would permit family support which he said was essential when parents are going through the difficult times of surgery for their child.

“We are currently lobbying MLAs, have a Facebook e-petition and also a paper one and would welcome the support of the general public as we fight to retain this lifesaving service on this island,” he said.

“We would encourage everyone to visit Heartbeat NI facebook page, visit www.heartbeatni.com or call 07801 370 297 to register your support.”