Belfast Telegraph

Girl born with half a heart in plea for teen coronary ward

By Victoria O'Hara

A brave teenager who has half a working heart has spoken of the need for better support for young people with congenital heart conditions who face a transition to being treated in adult wards.

Lucy Allen (16) from Carrickfergus was born with hypoplastic left heart syndrome and has had three major life-saving heart surgeries - the first when she was just two days old.

In April she had to be rushed to A&E when she suffered from chest pains and breathlessness.

However Lucy, a pupil at Downshire High School, had to be treated in an adult ward in the RVH.

A situation she described at the time as "scary".

"I was 15 at the time and didn't know any of the doctors or nurses over in the RVH," she said.

"We are an in between age, not really children but not adults yet so at the minute there is no place for us to belong," she said.

"It would be good to have a place specially designed for children like us as there will be more and more of us every year. But I'm transferring to adults at the moment and it can be quite scary."

The charity Children's Heartbeat Trust has also called for more resources to be invested to help young people receive the "age appropriate" care in Northern Ireland.

It says it is vital that young teenagers and their families experience a smooth transition process.

Lucy explained she was born without a left ventricle - the chamber in her heart that pumps blood around the body.

"So I basically have half a heart and I was born with my condition. I was taken in an air ambulance to Birmingham when I was one day old and had my first surgery when I was two days old.

"My second when I was six months old and my third when I was five years."

She has since spent many weeks in Clark Clinic, a paedatric ward in the RVH in Belfast.

"I love Clark Clinic, me and my mum say it is like our second family. We have got a great relationship with all the staff and nurses. It is an amazing place to be, it is just reassuring and comfortable and is home in a way.

"But I'm now transferring into adult wards which can be scary for many families.

"I definitely think it would be good for politicians to listen to people like us so the changes are right and it is important for them to listen to families like us who have been in hospital and it is nice for them to know us personally. We aren't just people on paper."

Lucy was speaking after a consultation was launched which proposes major changes to children's paediatric heart surgery services.

"I will need a transplant when my heart tires out but we are just not sure when that will be. But I'm feeling great now and probably the best I have been. I'm in school and studying for my GCSEs so everything is going great."

Speaking at an event at Stormont, Sarah Quinlan from the Heartbeat Trust, said: "Today was to raise awareness that congenital heart disease is a lifelong condition and we have a number of teenagers who are coming through the system and they need as much support and care and age appropriate support."

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