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Our children's experiences made us fight for change in a heartbeat

Children here who suffer from CHD must currently travel to England for surgery as local hospitals only have provision for adults. Laurence White reports on the move to set up all-Ireland units so parents don't have to travel across the water with sick youngsters.

Published 05/07/2016

Positive outlook: Sarah Quinlan of the Children’s Heartbeat Trust charity
Positive outlook: Sarah Quinlan of the Children’s Heartbeat Trust charity
Family affair: Robin Swann with wife Jennifer and his children Evan and Freya
Cardiac concern: Robin Martin with wife Karen and daughters Laurie and Hannah

The provision of an all-Ireland network of care for children with Congenital Heart Disease (CHD) took another step closer to fruition yesterday when the health ministers from Northern Ireland and the Republic announced a funding package of £42m for the development of the service over the next five years.

The service, which will be phased in, will mean that all but the most complex cases, possibly around 10 a year, will be dealt within Ireland doing away with expensive and emotionally draining referrals to hospitals in Birmingham and London.

Paediatric surgery ceased in Belfast last January. The retirement of lead surgeon Dr Freddie Woods left only one paediatric surgeon in Belfast and it proved impossible to attract new specialists due to the relatively small number of operations carried out at the Royal Belfast Hospital for Sick Children.

CHD is a birth defect affecting between 770 and 830 newborns throughout Ireland annually - 220-250 in Northern Ireland. This results in 450 cardiac surgery operations each year and 500-550 cardiac catheterisations - the insertion of stents.

A number of reviews of the service were carried out and it was decided to create an all-Ireland model which would provide a series of interventions and therapies enabling the development of a world-class service.

The new service will be phased in three stages - building up capacity at Our Lady's Children's Hospital at Crumlin in Dublin where operations will be carried out; developing specialist cardiology centres in Belfast and Dublin and delivering regional cardiology service hubs in Londonderry, Craigavon, Cork and Limerick, where diagnosis and referral to specialist centres can be carried out. Currently parents here concerned about their children have to travel to Belfast for such services.

Linda Martin, the CHD network manager, said this would be a much better model for parents, eventually leading to all but the most complex surgery and all pre-and post-operative care being delivered to children closer to their homes and preventing travelling for surgery to England.

"Parents can feel quite a sense of isolation at a time of great strain when having to stay in England with their children.

"This will be a world-class service. There are some really innovative people working in cardiology at present who will drive the new service. Already some of the work being done in Belfast is being recognised internationally and this is an opportunity to build on that."

Sarah Quinlan, chief executive of the Children's Heartbeat Trust charity in Belfast, also welcomed the announcement, adding: "We work daily with families who are living through their children's surgery and see how difficult it is for them. When the all-Ireland system is up and running that is going to be a great benefit to them."

The charity, founded in 1984, has been in the forefront of the campaign for improved services.

‘At nine months my son had to go for surgery in Birmingham’

Robin Swann (44), the UUP MLA for North Antrim and his wife Jennifer have two children, Freya (5) and Evan (3). They live at Kells in the constituency:

Evan was diagnosed with CHD when Jennifer was 20 weeks pregnant, so she and Robin new that he would be born with a heart defect.

When Evan was born it was discovered he also had only one kidney and also had problems with his bowel, meaning that he had to be kept in the Royal Belfast Hospital for Sick Children for the first nine months of his life.

Robin says: “At that stage the paediatric surgery service in Belfast had just ceased and there was no surgery available to children from Northern Ireland anywhere in Ireland. That meant that Evan had to be transferred to Birmingham for an operation. That is very difficult for parents and that’s why I have campaigned for an all-Ireland service for children with CHD. I would have liked it to be in Belfast but we do not do enough operations to make it a viable centre. The new service means that families will be a lot closer to home when their children have to have surgery.”

He adds: “The first time we went to Birmingham myself and Jennifer were there for three weeks which is quite normal. I was lucky that the Assembly was in recess at the time but many other parents would have to take time off work and would lose money. They would not have the flexibility that I have. The strain on parents having to go to England with their sick child is not just emotional, it is also financial.”

Evan’s stay in Birmingham was protracted because his little lung collapsed after his open heart surgery and he had to have another emergency operation.

Robin is full of praise for the facilities in Belfast for post operative care and monitoring of children with CHD and also for the diagnostic skills available. “It is really a first class service”, he says.

Last September Evan had to return to Birmingham as problems arose with one of the heart valves which had been repaired in the first operation. At that stage it was also decided to fit a pacemaker as his heart rhythm had never been regular.

“We knew that he would have to have a pacemaker fitted later in life, so decided that it was best to have it done then.”

Robin admits that the experience of travelling to and from Birmingham with a sick child can be surreal.

“I found it strange that you just travel with the child on regular flights as if you were going on holiday. You have to go through the same security checks and check-ins, but in reality you have a child who is going to have a major operation and who is then coming back after open heart surgery. Yet, to all intents and purposes, you are treated just like every other passenger.”

He points out that they have been lucky in having grandparents to look after Freya when he and Jennifer travelled to Birmingham, but admits that other parents may not have that support or may have a larger number of children to care for.

Evan is now progressing well but is subject to six monthly reviews. “CHD is never cured. It may be fixed for a while but the child requires continual monitoring and Evan will require more surgery later in life — when, we just don’t know.”

He praises the support available from the Children’s Heartbeat Trust charity and says the introduction to other parents who have gone through the same experiences is vital. “We are able to discuss the problems that arise both with the child and on travelling to England — surgery is also performed in the Evelina clinic in London — and we have met two other families who live near us who have children with CHD. It enables families to ask each other questions that they may be embarrassed asking healthcare professionals.”

Mr Swann, who heads an all-party CHD group in the Assembly, points out that when children reach their mid-teens they are then able to get surgery in Belfast in the adult cardiac unit. He would like to see more facilities for these young people. “It is not ideal that they could be on wards with elderly people who have cardiac problems. It is a very different environment for them after spending their childhood in dedicated children’s wards.”

‘We just have to keep on hoping for the best for Hannah’

Robin Martin (38), a musician and pet shop owner, and his wife Karen (34), a full-time mum, have two daughters, Laurie (6) and Hannah (2). They live at Lisbane outside Comber:

When Karen was 20 weeks pregnant with Hannah, a scan detected that the unborn baby had a congenital heart defect.

Robin recalls: “We were well prepared by doctors at the Royal Victoria Hospital in Belfast for what would happen when the baby was born.

“That was very helpful and, of course, as a parent you have to face whatever issues arise and you will do anything for your child.

“For the first three months of her life Hannah was kept in hospital. She was moved to the Royal Belfast Hospital for Sick Children, but at one stage went into heart failure and had to be taken to hospital in Birmingham, where she stayed for six weeks, and then taken back to Belfast.”

Hannah’s condition means that her cardiac arteries are back to front and only one of her cardiac chambers is pumping blood instead of four.

Karen says: “The surgery she has undergone — she has already had two open heart operations and will need another when she is aged about five — is only palliative, it is not a cure.”

Hannah had her first operation when she was six weeks old and another in November last year.

That, says Robin, was a nightmare experience for the couple.

“The hospital in Birmingham was operating at maximum capacity. There were no infant care beds available and the staff were having to work very hard. They were tremendous, but the workload was too intense.

“Hannah’s operation was postponed on nine successive occasions, which was very stressful.

“She would be given no food in preparation for the operation and then it would be postponed and that went on and on.

“There were surgeons available to do the operation, but there were no intensive care facilities free to look after the babies following their surgery.

“Being in Birmingham for that period of time was very stressful.

“We had to take Laurie over with us at our own expense, because she did not want to be separated from us. Also, since I am self-employed that meant there was no income, which adds to the problems.”

Parents who take their children to Birmingham from Northern Ireland are given free accommodation at the Ronald McDonald House — flats provided by the charity run by the McDonald’s fast food chain.

That, says Karen, is a tremendous help. “When you are in Birmingham there is little other support available to you and that is why I always ask friends when they are in a McDonald’s outlet to make a donation to the charity.

“Being over there away from family and possibly for an indefinite period is very difficult to cope with.

“If we did not have the accommodation provided for us, it would be almost impossible.

“The establishment of an all-Ireland network to deal with children with CHD will be a tremendous boost to families coping with this problem. Dublin is only two hours away, so they can get support from other family members.

“Unfortunately that will not be a benefit to us, as Hannah’s care pathway means she will have to go to Birmingham when any intervention is required.”

Hannah is on medication to help her heart pump her blood, but she gets out of breath very easily if playing or even climbing stairs.

Karen adds: “In winter, colds or flu would be very serious for her, so we have to be quite protective of her and that may be an added issue when she starts school.

“Will she be able to do PE, for example, or go on trips or outings?”

She says Hannah’s life expectancy could be curtailed because of her condition, although medical advances in this sector are progressing quickly, bringing renewed hope to parents.

“There could be some complications associated with her condition as she gets older which may require some minor operations, but she will be carefully monitored at the Clark Clinic at the Royal Victoria Hospital for Sick Children, where she has to go for check-ups.

“We just have to keep hoping for the best.”

  • The Children’s Heartbeat Trust is based in Belfast, tel: 028 9031 2228 or visit for more information

Belfast Telegraph

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