Experts in paediatric care will meet in Belfast on Friday for the first day of the annual conference of the Congenital Heart Disease Network. The network emerged following a commitment from the NI Executive and the Irish government in 2015 to create a "world-class patient and family-centric CHD service for the island of Ireland".
The network was launched after health ministers on both sides of the border accepted the recommendations of an international working group led by Dr John Mayer from Boston Children's Hospital. It was the first clinical network to operate on an all-island basis.
The rationale behind the network was to improve services to and outcomes for seriously ill patients with congenital heart disease. By concentrating surgery at Our Lady's Hospital in Dublin the greater throughput of patients from across the whole island meant the surgical skill sets would improve.
Paediatric surgery ended in Belfast in 2015 but doctors on the Royal Hospitals site provide all other kinds of care for children with CHD. The opening of a dedicated children's heart clinic means more children can be treated closer to their family home.
A new children's hospital is due to open in Dublin in 2023 and in 2023/24 a similar facility will open in Belfast on the Royal Hospitals site, improving facilities and resources for this sector of the NHS.
Dr Len O'Hagan (right), chair of the CHD Network, says the growth and success of the network has surpassed his expectations.
"A remarkable number of people - medics, nurses, administrators set about putting the children and their families at the forefront of their efforts. There were all sorts of regulatory, cultural, professional and political challenges facing them but they have been largely overcome," he says.
"The result is improved services not just for the children with congenital heart disease from Northern Ireland but the network has lifted the whole service throughout the island.
"There have been improvements in medical treatments including investment in a new lab at the Crumlin hospital which has reduced the requirement for surgery in a number of children.
"We are also investing in paediatricians with a special interest in cardiology in Craigavon, Altnagelvin in Londonderry and in Limerick hospitals so that children can be looked at closer to their homes.
"The network has proved a remarkable exercise with doctors from two jurisdictions managing a cohort of patients across those jurisdictions. Every Thursday a conference is held between the two centres in Belfast and Dublin to decide how to provide the optimum service to the children.
"By the end of 2020 no children in Ireland should have to go outside the island for major surgery, apart from transplants. That is making a real difference."
The All-Island Congenital Heart Disease Network Conference 2019 takes place on Friday and Saturday at the Titanic Centre, Belfast. For tickets, visit www.eventbrite.ie/e/all-island-congenital-heart-disease-network-conference-2019-tickets-64536916655
Edel McInerney, a physics teacher at Campbell College, is married to Dr Barry McInerney, head of disease surveillance at the Agri-Food and Biosciences Institute. They have three children, Eoghan (10), Cormac (8) and Fionn (2). She says:
Fionn was born at 29 weeks and five days at the Royal Jubilee Maternity Hospital in Belfast. He had a heart disease - a missing valve on the right side of his heart - which could not be fixed. At that stage he was too small for any procedure to be performed.
He was kept in Belfast for three weeks and then transferred to Dublin where he spent 64 days as he grew strong enough for surgery to be carried out and was then sent back to the Clarke Clinic at the Royal.
He recuperated for a month and then we got to bring him home for the first time. He was with us for up to six weeks and then returned to Dublin for another major heart operation.
He will undergo another major operation next year which will last up to eight hours.
Essentially he will be left with half a heart - a single pump system - and that is how he will be for the rest of his life.
His condition obviously affects him. He cannot control his body temperature and his oxygen levels are low - doctors are delighted when they go above 75%. He is not yet able to walk although we hope that will change in the next few months as he is undergoing intensive physiotherapy.
We wonder how he will cope when he goes to school. At the moment he will sleep for 12 hours a night and maybe 2-3 hours during the day.
We also wonder if he will be able to hold down a job in later life but we are a very positive family and we know that the heart is a muscle and it can be expanded. Having said that Fionn is full of life and full of joy and really enjoys playing with his older brothers.
He - and we - have come through a lot. Initially we were warned that the survival rate for his condition is very low and that we should prepare ourselves for the worst. We even had counselling in preparation for anything happening to Fionn.
That is why we are so grateful for this all-island network. Initially it was suggested that we would have to take Fionn to Birmingham but thankfully that was not the case. The doctors treating him in Belfast and Dublin work so closely together and given all the months that Fionn spent in hospital either myself or my husband were able to be with him virtually every day as it is really only a one and a half hour drive between the two cities.
People often forget the impact something like this has on the whole family. His brothers were even able to visit Fionn in hospital as he grew stronger. There were strict conditions attached to their visit but it made a huge difference to them to see him since he spent eight months of his life in hospital. They visited him on Christmas Day and that was the best ever present for them.
My husband and I were also able to see what the two older boys were involved in like their Christmas show at school. That would not have been possible had we been hopping on and off aeroplanes to England.
We are most grateful for the degree of communication between the clinicians in the two centres. We have got to know them and that is very important when they are carrying out complex surgery on our son. It was a life or death situation for Fionn after he was born."
Keelan Gault (19) is from Cookstown and was born with congenital heart disease. He says:
I was born in August 2001 and it was three days before anyone realised I had congenital heart disease. I had three problems with my heart - I had a hole in my heart, narrowing of my pulmonary artery and excess muscle on my heart.
My parents were told by Dr Craig from the Royal Belfast Hospital for Sick Children that I would require heart surgery when I reached the age of two and my heart had got stronger.
However it was much earlier, at nine months of age, when it was decided that I should have heart surgery. The operation was conducted in Belfast in May 2002.
Initially after surgery complications began. My heart failed to stay in sinus rhythm and I was put on a ventilator for 10 days. My other organs started to fail and I required kidney dialysis and extra drains in my lungs.
I spent 12 days in cardiac intensive care and doctors told my parents that I was as sick as a wee baby could be. The rest of my family were sent for. It took several days for my heart to regain its proper rhythm.
At age four I required further surgery to remove further narrowing of the pulmonary artery but this time I recovered well.
Since then I have been able to live life to the full. I have always been interested in sport and have played football since the age of five, mostly in goals. Currently I am taking a football scholarship at Windsor Park and I coach young players, especially aspiring goalkeepers.
Occasionally I still have concerns that I may require further surgery but my CHD is part of who I am and I am proud of how much I have overcome like so many other young people with CHD.
My message to other young people is that you can live with a serious heart condition and still have an active life."
Keelan will tell his story at the conference tomorrow
Professor Frank Casey is a consultant paediatric cardiologist and the Network Clinical Lead in Northern Ireland. He says:
The development of the network has allowed us to pool the expertise of the paediatric cardiology teams north and south. The main advantage is working towards an improved cardiac surgical service for patients.
The best results for children's cardiac surgery are from institutions where they treat large numbers of patients.
By combining our expertise we are working towards performing 500 children's heart operations annually on the island. Currently the number of children in Northern Ireland who need cardiac surgery is around 110 annually and around 70 of those go to Dublin for their operations. In the coming years we hope that virtually all of those children will have their operations in Dublin.
The biggest limitation is around expansion of staff and the number of intensive care beds available.
As well as the 70 children from Northern Ireland who undergo surgery in Dublin each year there are another 80 who undergo interventional catheter procedures - like keyhole procedures. We are hoping to increase the 150 children currently going to Dublin to around 200.
Having this network is a big advantage to families as well as clinicians. We wanted to get away from the situation where mothers shortly after giving birth had to fly to England where their ill child would undergo surgery.
But the development of the network is about more than the above. Our aim is to deliver as many other aspects of care for children with congenital heart disease as close as possible to their families. The new children's heart clinic at the Royal Hospital sites will provide pre-op, post-op and imaging services for the children. In Belfast we deliver all in-patient and out-patient care for children with heart disease apart from surgical procedures. Not every child needs an operation. The heart centre here provides us with the facility and equipment to deliver many other aspects of care.
One of the aims of this weekend's conference is to try to improve detection rates before babies are born.
There is no doubt that the development of the all-island network raised a number of challenges for all of us.
We were faced with two different health services and having to create a shared model of care. It is a ground-breaking venture in terms of getting the best possible care for children and putting them at the centre of the model. We have had to change the way people think and how to deliver very specialised care like this. That has been a gradual process.
Another challenge was Brexit. I am confident that the arrangements we have in place between the hospitals will mean the service will not be affected by Brexit. It was a concern to both staff and families but we have looked at the potential problems in a rigorous manner."
Eilish Hardiman (right) is the CEO of Children's Health Ireland, the body set up in 2018 to oversee the development and governance of specialist acute paediatric hospital services in Ireland. She says:
We very much take an all-Ireland view on these services. There are mutual benefits in doing that.
The premise for setting up the all-island network was to ensure that the clinicians in Belfast and Dublin would be exposed to greater numbers of children and adolescents with complex heart conditions and thereby increase their skill sets.
The net result is better outcomes for the children because of that greater exposure.
All the cardiac services are performed at Our Lady's Hospital, Crumlin (the network also includes Temple Street Children's University Hospital and the National Children's Hospital, both also in Dublin), but one of the challenging factors is the number of available critical care beds.
We have critical care beds in two of the hospitals but have to work across two sites to maximise these beds. Work to provide a new children's hospital is well advanced - building has reached the fourth level and work is beginning on the new intensive care unit and operating theatres. It is planned to open in 2023.
That would increase the number of critical care beds, provide new cardio cath labs and also concentrate staff on one site, all of which will be of benefit to the whole island."