NI mother: my baby son owes his life to northand south working together

As The All Island Congenital Heart Disease (CHD) Network prepares to hold its annual conference in Belfast for the first time, Laurence White talks to a Bushmills mum whose baby son owes his life to the development of the all-Ireland health initiative

Sian Rowan laughs when she recalls how she planned to tell son Leo of her achievement on the day he was born. The 26-year-old from Bushmills, who wants to become a personal trainer, passed one of her fitness examinations two hours before giving birth to Leo on April 4 this year. “I thought then that would be my big story to tell Leo when he was older.”

But Leo had a much greater drama in store for Sian and partner Gary Kirkpatrick (32).

During the pregnancy there were some concerns that Leo might have Down’s Syndrome but scans reassured the couple that was not the case.

“Leo was born nine days early,” says Sian “and he was kept in the Causeway Hospital for observation for a couple of days because I had an infection and had not received antibiotics in time due to the speed of his birth. His breathing was a little fast but when we got him home everything seemed fine.

“He was 6lb 12oz when he was born but soon we noticed that he was not gaining weight as would be expected. I was breastfeeding so thought perhaps he would do better on formula but that didn’t seem to work either.

“The health visitor referred him to our GP who passed us on to the hospital again where he was given high calorie milk and had his weight monitored. Nothing seemed to work, but our thought was that perhaps he had a thyroid problem.”

Leo’s referral to the Royal Belfast Hospital for Sick Children showed a much more serious problem.

It was diagnosed as ALCAPA (anomalous left coronary artery from the pulmonary artery), a congenital heart problem. In a normal heart the left coronary artery originates from the aorta, but in this case it was attached to the pulmonary artery.

The effect is that the heart muscle on the left side of the heart is being fed blood lacking in oxygen which, if left untreated, can cause a heart attack in the child and death within a year.

Surgery to detach the left coronary artery from its position and move it to the aorta was required and that surgery would take place in Our Lady’s Children’s Hospital in Dublin. Previously complex surgery of this type would have required families travelling to England for the procedure.

Sian says: “It is a very rare condition and we were fortunate that Leo was able to be taken to Dublin the next day — this was in June. Surgery had to be postponed for a day because of another emergency case but went ahead on the Saturday. It was an eight-hour operation.

“I remember it was a beautiful day and Gary and I went out for a walk around the area of the hospital while the surgeons operated.

“Unfortunately there was a problem — I think a kink in the artery — and Leo went into cardiac arrest which left him without oxygen for four minutes. That caused concern that he might have suffered neurological damage but so far so good.

“Luckily the surgeons were still there and were able to respond immediately. Leo was placed on a bypass machine which gave his heart and lungs a rest until further surgery was carried out three days later and that was successful.”

However, Leo was to remain in Our Lady’s Children’s Hospital for 52 days. Sian stayed there the entire time although Gary had to return to work at one stage and also to help look after their other two children, daughters Mila (2) and Kaelyn (4).

Sian recalls: “My family had been caring for the children in our absence, with each taking a day off work each week to ensure cover. It was a lot of disruption but they did not mind as they would do anything to help us.”

Sian is full of praise for the assistance the family was given during this traumatic period. “There was accommodation in the hospital which was made available to us. It was on the same floor as the intensive care unit so we were able to stay very close by Leo. There was also a Ronald McDonald house for families of young patients but I felt it was too far away.

“We had cooking facilities and fast food outlets made donations of their products six nights a week.

“I also have to give thanks to the Children’s Heartbeat Trust which supports families of children with congenital heart disease. They provided financial support, but equally importantly, emotional support. We would get telephone calls asking us how things were going and how we and Leo were coping. It was important to know that people — outside of our own families obviously — were concerned and willing to help us.”

Leo’s stay in Dublin was prolonged because drains had to be inserted to take away fluid leaking from his chest and abdomen. He was also being ventilated to help in his recovery.

“When the last chest drain was

❝ I would like to thank all the staff in Belfast and Dublin for doing such a fantastic job