New statistics that we’ve released today show the true cost of congenital heart disease on UK families. Parents reveal the challenges they face, and ask for support for our Christmas Appeal.
Calum Morris, aged 11, drawing of the journey to his heart getting better.
We spoke with nearly 600 UK parents who have a child living with a congenital heart defect, to better understand the devastating impact these conditions have on young people and their loved ones.
Our survey shows that nearly six in ten parents say they have been forced to work less or give up their careers entirely following their child’s diagnosis, with over half admitting this has put a significant strain on the family finances. Nearly all parents we spoke to say they have lost sleep because of the worry caused by their child’s illness.
The survey showed just how isolating congenital heart disease can be for parents, as over three quarters say they feel that no-one understands what they are going through, while half say they have lost friends since their child has been diagnosed.
John Morris is the father of Calum Morris, aged 11. Calum was diagnosed with Truncus Arteriosus meaning he was born without one of the main arteries in his heart. He has had to undergo four major surgeries in his short life and faces a future of repeated operations.
John explains: “Lots of families split when they go through something like this as they can’t cope, which is really sad. But we try to maintain a bit of normality and talk to each other as much as we can. We feel truly blessed to have such an inspirational fighter like Calum to call our own. Calum changed our lives – he won't be defined by his condition but instead by his amazing personality and determination.”
The stories of families like Calum’s, and the statistics released today show the continued need for life saving research into congenital heart disease, which affects around 4,000 UK children each year. Although recent advances mean most children diagnosed with a congenital heart defect grow up to become adults, many face the prospect of multiple surgical operations, and sadly around 400 children each year still die before they reach school age.
Talking about the impact of his son’s heart condition, John adds:
“Having a child with congenital heart disease impacts your life in so many ways, which is why I’m supporting the BHF’s Christmas Appeal. My wife Nicola and I have been in and out of the hospital ward since Calum was born, each time on tenterhooks until he wakes up from surgery.
Dr Mike Knapton, Associate Medical Director at the BHF, added:
“Around 4,000 children across the UK are diagnosed with a congenital heart defect each year. These findings show the real impact this can have on the entire family and the daily struggles that parents up and down the UK have to contend with.
With many parents being forced to give up work and cope with a loss of income, we need to do more to improve the lives of children living with a heart condition and minimise the impact it has on their lives and their family, which is why we’ve launched our Christmas Appeal. Through your generosity, and our research, we can improve the outcomes of thousands of children and their loved ones."
Money raised through the BHF’s Christmas Appeal will help fund the vital research that helps to keep tiny hearts beating. Visit christmas.bhf.org.uk to make a donation to the BHF this Christmas.