20/11/2017 15:46 GMT | Updated 20/11/2017 15:46 GMT

The Impact Of Congenital Heart Disease: Beyond The Heart

British Heart Foundation
The impact of congenital heart disease spreads far and wide, according to the British Heart Foundation

Congenital heart disease has a major impact on affected children across the UK, but it also changes the lives of families, putting parents under emotional and financial strain. That’s what we heard from around 600 parents of children with congenital heart disease, when we asked them what challenges they face.

Thanks in part to British Heart Foundation (BHF) research, four in five children born with congenital heart disease now reach adulthood. The need to fund more research into congenital heart disease, to improve survival rates and the quality of life for thousands of children, remains urgent.

Each year around 4,000 children in the UK are diagnosed with a congenital heart defect and it remains the UK’s most common major birth defect, but an estimated 400 of those children won’t survive until school age.

Many children will face a future of repeated surgeries and weakened hearts. These children have physical, emotion and education needs and it means there are thousands of parents up and down the UK who have to contend with the daily struggles of supporting a child with congenital heart disease.

Our survey revealed how seriously the impact of congenital heart disease affects the whole family unit. Nearly all parents polled said they have lost sleep because of the worry caused by their child’s illness. More than half have been forced to work less or give up their careers altogether following their child’s diagnosis and over half (53%) admit it has put a significant strain on the family finances.

With friends and family often not being able to relate to their problems, parents also explained just how isolating the situation can be, with over three quarters saying they feel that no-one understands what they are going through.

The BHF is fully committed to improving the quality of life of children living with congenital heart disease and minimise its emotional and social impact. But without donations, our researchers couldn’t continue their vital work, which is why we’ve launched the BHF’s Christmas Appeal to raise funds and awareness into the issue.

One of many research projects we are funding is being led by BHF Professor Massimo Caputo and his team at the University of Bristol. They are trying to find ways to protect the hearts of children and babies during heart surgery.

Young or premature babies having surgery to correct congenital heart defects are particularly vulnerable. Parents are often left in the impossible positon of having their child undergo lifesaving open heart surgery, with the knowledge that some surgical procedures can themselves damage a child’s heart, causing scarring that puts them at risk of sudden cardiac death later in life. Parents face difficult and emotionally challenging decisions when consenting to surgery, in the knowledge that major heart surgery will inevitably carry significant risks.

Professor Caputo has recently shown that sildenafil, a drug commonly used to treat high blood pressure in the lungs, can protect newborn rat hearts from damage. Professor Caputo and his dedicated team are now exploring whether using sildenafil during open heart surgery could further protect children’s hearts during surgery.

We urgently need to find new ways to increase survival rates and improve the quality of life of children with congenital heart disease. The BHF is willing to do whatever it takes to ensure children get the start in life they deserve and I am encouraging everyone to donate whatever they can to the BHF this Christmas, to ensure children get the best treatment and enable them to achieve their full potential in life

Money raised through the BHF’s Christmas Appeal will help fund the vital research that will help to keep tiny hearts beating and improve children’s quality of life. Visit