Most parents prepare for first steps, Some prepare for first heart surgery
Every year 200 babies are born in Northern Ireland with heart disease, making it the most common birth defect in NI. That was the message delivered at the launch of Heart Week which is organised by the charity to raise awareness of congenital heart disease and the impact it has on children and their families in Northern Ireland.
The launch of Heart Week saw children with Congenital Heart Disease (CHD) and their families gathered in Belfast for a 200 red balloon event to mark the 200 babies born each year with CHD.
Speaking at the campaign launch, Sarah Quinlan, Chief Executive, Children’s Heartbeat Trust, said: “The birth of a baby is a wonderful and happy experience for families. However, over 200 each year in Northern Ireland will also be faced with the diagnosis of a congenital heart defect which will mean that rather than beginning to plan for baby’s first steps or first words, a number of these families will find themselves planning for the first heart surgery.
“Heart disease is the most common birth defect for children born here, and, while it can be detected during ante natal scans, it is also often not diagnosed until birth and on occasion not until days or weeks after birth. At this young age, these babies go through complex procedures, such as open heart surgery, interventions or having a pacemaker fitted. For parents of new born babies this a lot to deal with, particularly when it can mean travelling to England for surgery.
“HeartWeek aims to raise awareness of the prevalence of congenital heart disease and the work of the Children’s Heartbeat Trust, who provide support for these babies and their families, from the early days right through to their teenage years.”
In July 2016 Health Ministers Michelle O’Neill MLA and Simon Harris TD announced the commencement of the All-Island CHD Network for the treatment of children with congenital heart disease. The network will see paediatric cardiac surgery undertaken in Our Lady’s Children’s Hospital, Crumlin, Dublin, (OLCHC) with all other paediatric cardiology care taking place at the Royal Belfast Hospital for Sick Children. As of March 2017 all urgent and emergency surgeries are taking place in OLCHC, and all elective surgery is scheduled to take place there by the end of 2018.
Ms Quinlan added: “Our goal is the development of facilities that will ensure a world class care pathway for all children born with congenital heart disease, including the development of a Children’s Heart Centre in Belfast as central element of a fully realised All-Island network.
“With over 200 babies each year born with a congenital heart defect it is crucial that these vulnerable children can access the best care and services possible.
The Children’s Heartbeat Trust is asking people to support HeartWeek on Facebook and twitter using the hashtag #200HeartBabies.