Teen’s talk on living with congenital heart disease

A Carrick teenager has told the Assembly’s All-Party Group on Congenital Heart Disease of her experiences of living with the disease.
Carrickfergus teenager Lucy Allen talking to MLAs about what it's like living with congenital heart disease (pic by Kelvin Boyes/Press Eye). INCT 47-704-CON HEARTCarrickfergus teenager Lucy Allen talking to MLAs about what it's like living with congenital heart disease (pic by Kelvin Boyes/Press Eye). INCT 47-704-CON HEART
Carrickfergus teenager Lucy Allen talking to MLAs about what it's like living with congenital heart disease (pic by Kelvin Boyes/Press Eye). INCT 47-704-CON HEART

Just a day after the launch of the consultation process on the future of paediatric cardiac services in Northern Ireland, Lucy Allen discussed how the transfer from children’s to adult services affects her.

Dr Chris Lockhart, an adult congenital cardiologist, also spoke at the event. The initiative was backed by the Children’s Heartbeat Trust, which supports young people and their families and the Clark Clinic at the Royal Belfast Hospital for Sick Children.

With 200 babies born each year with a heart defect, congenital heart disease is the most common birth defect in Northern Ireland. Around half of these will need either medical treatment or heart surgery and will require ongoing monitoring throughout their lives.

Pictured on the steps of Stormont are (from left to right): Sarah Quinlan, Children's Heartbeat Trust, Robin Swann MLA, chair of the All Party Group on Congenital Heart Disease, Zoe Fleck (12),  Dr Chris Lockhart,  Adult Congenital cardiologist and Lucy Allen (16).Pictured on the steps of Stormont are (from left to right): Sarah Quinlan, Children's Heartbeat Trust, Robin Swann MLA, chair of the All Party Group on Congenital Heart Disease, Zoe Fleck (12),  Dr Chris Lockhart,  Adult Congenital cardiologist and Lucy Allen (16).
Pictured on the steps of Stormont are (from left to right): Sarah Quinlan, Children's Heartbeat Trust, Robin Swann MLA, chair of the All Party Group on Congenital Heart Disease, Zoe Fleck (12), Dr Chris Lockhart, Adult Congenital cardiologist and Lucy Allen (16).

Developments in medicine and the success of paediatric cardiology and cardiac surgery means that more children born with a heart defect are now reaching adulthood.

Lucy, a 16-year-old with Hypoplastic Left Heart Syndrome, said: “When I was brought to the adult hospital I felt completely uncomfortable and awkward. Although the doctors and nurses were lovely, I was still the youngest there and it made me feel isolated. Clark Clinic felt like a second family to me so to suddenly have a different doctor was quite a shock.”

Sarah Quinlan, chief executive of Children’s Heartbeat Trust, said: “Adolescence is already a difficult time for many young people, not to mention for those with complex heart defects who face many additional challenges. To help enable a smooth and seamless transfer of care the transition service needs to be properly resourced with staff, clinics and age appropriate inpatient wards. Most importantly, young people, carers and parents need to be at the centre of any decisions and fully informed about their care and support available.”

For more information visit www.childrensheartbeattrust.org