Allie’s story gives anguished parents hope

ONE mother’s way of coping with her daughter’s heart surgery is helping parents of children with congenital heart defects.

Ann Haig kept a diary when her only daughter Allie underwent heart surgery in February 2000 she was seven months old and had already suffered a series of cardiac arrests.

Writing it all down was Ann's way of venting her raw emotions. She also had the inexplicable urge to keep a photographic diary.

It was only after showing the photographs to a friend whose child also needed heart surgery that Ann realised the value of her personal record.

Ann's book, simply called Repairing Allie, is to be included in a special pack prepared by Heart Children Ireland for parents of children awaiting heart surgery at Our Lady's Hospital for Sick Children in Crumlin.

"I have never written anything like this before. It is really written from the heart," Ann said.

"The lead-up to Allie's surgery was a nightmare but it is almost as if it happened to someone else now because Allie is so well."

Ann's book will also be distributed to trainee doctors and nurses, so they can understand the parents' perspective a little better.

Thankfully, Allie, who will celebrate her fourth birthday next month, continues to thrive.

"Allie is a great eater and a very active and curious child. It is hard to believe that once she was unable to move and I had to struggle to keep a few ounces of milk down her."

Ann can still recall casually passing a tube down Allie's nose in Bewley's restaurant while having a conversation with a friend.

She also vividly remembers the weekly visits to the health clinic to weigh Allie and the despair she would feel when she had not put on weight.

Heart Children Ireland helped Ann cope by giving her a booklet explaining her daughter's heart condition using simple terms and diagrams.

Ann quickly realised that the cardiac liaison nurses were a necessary support and is still baffled about how they offer so much support to so many families.

Allie will need more heart surgery when she is an adolescent or young adult. "I am just hoping that by then it will be keyhole surgery because of the advances that are being made all the time," Ann said.

"The doctors told me that if Allie had been born 10 years ago she would have died."

Ann is glad her book is being published because she knows it is already helping people find out what to expect. Parents of children with congenital heart defects have already told her that her account mirrored exactly what they went through.

"If parents know what to expect it makes it easier in a small way," she said.