Northern Ireland mother: My baby owes his life to north and 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 removed he was transferred back to the Children's Hospital in Belfast to complete his recovery. The first attempt to remove him from ventilation was unsuccessful but the second one worked. In all he spent about 10 weeks on the ventilator."
Leo was eventually allowed home in September for 10 days but when doctors examined him for his first review he was found to have fluid on his lungs and required oxygen. He was readmitted to hospital for seven weeks.
He got home again on November 4, seven months after his birth, and so far the signs are encouraging. A further review conducted on Monday this week showed him progressing well and putting on weight.
Sian says: "Monday was my birthday and Leo's all-clear was the best possible present. I only wanted to make sure that my little boy was coming home again. The girls had asked me when Leo was going for his review and if he would be coming home again. They didn't really want him to go but now they are delighted.
"He is still sick and will be for a long time but all he does is smile. He is such a happy wee thing.
"Hopefully his condition should have no long-term effects on him and he should be able to lead a normal life. He should not require any more surgery and his next milestone is in December when his heart function will be examined. We have a monitor to keep an eye on his oxygen levels.
"I would like to thank the medical and nursing staff in Belfast and Dublin for doing such a fantastic job looking after Leo. I don't think we realise what a fantastic institution the health service really is. Being in a hospital you get a different perspective, it is a different world.
"We take the health service for granted - for example one small bottle of one of the medicines Leo takes costs £200, but we don't have to pay for that. The surgery in Dublin and our accommodation there was also paid for. It is only at times of need that we realise how lucky we are to have this service."
Children's Heartbeat Trust, visit www.childrensheartbeattrust.org
Belfast and Dublin clinical teams in partnership
Agreement on The All-Island Congenital Heart Disease Network was reached in 2015 and children's heart surgery services at the Royal Hospital in Belfast ceased.
That followed a review in 2012 commissioned by the health ministers in Northern Ireland and the Republic which said that surgery was no longer sustainable in Belfast with many operations taking place in either Dublin or England.
This year until September, 23 patients from Northern Ireland had surgery performed in Dublin compared to eight in the whole of last year.
Speaking ahead of the network's annual conference being held tomorrow and Saturday, Dr Len O'Hagan, chair of the CHD Network Board, said: "We are delighted to host the All Island Congenital Heart Disease Network conference in Belfast for the first time. The partnership approach between the Belfast and Dublin clinical and nursing teams, and the involvement of patient representatives, is essential to the success of the network.
"This event provides an opportunity for further shared learning which ensures that global enhancements in care provision for children and young people with heart disease are advanced across the entire service. The fact that we have some of the leading names in paediatric cardiac care from across the globe addressing the conference highlights the network's ambition to join the ranks of the world's best children's heart care providers."
Keynote speaker will be the paediatric surgeon, Dr Christopher Caldarone, from the Hospital for Sick Children, Toronto, Canada, who will discuss his views on leadership in health care and the clinical environment.