Kids like Odhran can’t afford to lose specialist surgery

It reminds her of how she had no friends and family for support as she sat at Odhran’s bedside watching him fight for his life following open heart surgery in Birmingham.

At one point a phone call from Birmingham to Lurgan prompted Odhran’s friends and family back home to think he’d died.

Odhran was born on August 1, 2009 with a congenital heart condition - pulmonary atresia with VSD and MAPCAs. He wasn’t expected to live but battled back bravely only to be hit with a further setback this year when his heart stopped during surgery in Birmingham.

His mother Charlene Edwards (24) from Riverglade Manor told her son’s story and spoke of the importance of the under-threat Paediatric Cardiac Surgery (Clark Clinic) at Royal Victoria Hospital.

Charlene said: “The heart condition he was born with was so severe that doctors only gave him a matter of hours to live but he proved them wrong.

“When he was 12 weeks he had a camera put into his heart which showed them pictures that meant surgery was possible.

“The tests they did on him were so severe he ended up in intensive care. But he kept fighting it. The Clark Clinic saved his life, he came out a different child. He was doing really well up until January when things to a turn for the worse again.”

Charlene continued: “He had his first surgery in Belfast when he was born. We were hoping to have all his surgeries done there as they did such a good job with the first one.

“When he took ill again we signed a consent form last June to have surgery done in Belfast and we were put on a waiting list. His condition started to deteriorate and because of the waiting list and logistical reasons we were told he would have to go to Birmingham for surgery.

“He had to have a full repair to his heart. He ended up having three open heart surgeries. He was only meant to have one, but ending up having three because of complications.”

Charlene added: “During one of the surgeries his heart completely stopped. I rang my mum to tell her we’d lost him. She rang round Lurgan to tell them he’d gone.

“Somehow they got his heart beating again and by the time I got speaking to my mum again half the town thought he was dead. That’s one of the things about being so far from home. You’re relaying messages by phone.”

Charlene said: “Being in Birmingham was a complete disaster. We had no support from family and friends. We were in Birmingham from January 18 for 11 weeks right up to May.

“We spent a clean fortune on food because we didn’t want to leave the hospital. It was just me and his dad there. It would have been much better practically, emotionally, financially and for family support if Odhran’s surgery was carried out here at home. Although I can do nothing but praise the staff in Birmingham there’s no place like home.”

She commented: “He was walking and talking before he went to surgery. Because of the complications his heart stopped and he stopped getting oxygen to the brain. When he woke up his eyes were clouded over. He couldn’t talk and he didn’t know who I was.

“He has to go to physio twice a week, occupational therapist twice a week and a speech and language therapist twice a week. He’s not walking again. He’s having to learn again like he did when he was one.”

She added: “Odhran loves cartoons. When he was in his hospital bed in Birmingham he got a little bit of assisted play from a specialist, but most of the time all he had was cartoons.

“He also likes cars, toys, drawing and painting.”

Odhran’s mum is his full time carer. Charlene is a qualified nurse, but hasn’t been able to do a day’s work since Odhran was born.

She said: “He’s had a hard time, but for someone who’s been through so much he’s such a happy child.

“He’s able to feed himself but he still has to have clear powder added to his foods. If he goes for three hours without eating he’ll be sick.

“It’s very important to have a steady routine, although that could be said of any child. If Odhran’s routine is altered he’ll get very sick.”

Charlene is of the opinion that the service in Belfast needs to be extended rather than removed. She said: “Because there was only 90 surgeries done last year they say it’s not sustainable at Belfast. There’s only nine beds in the Clark Clinic. If there were more beds they could do more there and meet the target of 100 surgeries.

“They’re saying we should work beside Dublin. Their waiting list is huge as well. Maybe we could take Dublin’s overflow to make up the extra 10.”

She commented: “My worst fear is Odhran wouldn’t have made it to Birmingham for that first surgery.

“There’s going to be a higher infant death rate if this service is removed from Belfast.

“Odhran will need further surgery. I hope that he can get it in Belfast.

“I can’t stand the thought of going away for more caths and surgery.”