Bray families mark Congenital Heart Disease Awareness Month
PARENTS, adolescents and adults with congenital heart disease (CHD), including families from Bray, attended the Beat Goes On conference to mark Global Congenital Heart Disease Awareness Month, on Saturday, February 24, at Chartered Accountants House, in Dublin.
The focus of this year’s conference was on the transition from child to adult CHD services, and attendees from Bray included Bronia Robbins, Amy Poynton and Laura Heffernan.
With separate programmes for teenagers and their families, the event addressed topics such as how to manage ongoing medical care, the dos and don’ts of being a teenager with CHD, and how to advocate for yourself as a person with a silent disability.
The conference was organised in conjunction with the Children’s Heart Centre, CHI Crumlin, and the Adult Congenital Heart Disease Unit at the Mater Hospital.
CHD is a general term to describe conditions or problems with the heart’s structure that are present at birth. It affects approximately one in every 100 babies born in Ireland each year, with approximately 500-600 children born with the condition annually.
Half of the children with CHD will require open heart surgery, with over 450 surgeries performed on children up to 16 years of age at CHI Crumlin each year. It is estimated that almost 19,000 people are living with the condition in Ireland.
Dr Rachel Power, a board member of Heart Children, the charity that supports those with CHD, said: “Thanks to tremendous progress in diagnosis, treatment and care, including advances in paediatric cardiothoracic surgery, we now have more adults living with congenital heart disease in Ireland, than children.
“That means that more and more young people are progressing into adulthood and getting to live their normal lives.”
The charity’s CEO, Sheila Campbell, added: “Heart Children’s mission is to support people born with congenital heart disease throughout their lifetime.
“The process of moving from child to adult care is a huge life challenge for the person with congenital heart disease and comes at a time when they may already be grappling with peer pressure and exams.
“Young minds and bodies must also adapt to new medical environments and practices. We need to offer young people the skills needed to manage self-care as adults, give them the confidence and language needed to navigate the medical system, and enable the resilience required to make their recovery after a bout of illness.
“The Beat Goes On conference aims to inform and to provide an important platform for young people with congenital heart disease from all over Ireland to network and share their life experiences.”