December 18 2014 Latest news:
Thursday, August 28, 2014
A little girl who was born with two holes in her heart and her family are giving their backing to a national campaign to raise money for research so more children in a similar position can reach school age.
Lucy Bluett, seven, from Bury St Edmunds, was diagnosed with a “a tremendous heart murmur” shortly after being born at West Suffolk Hospital in the town.
Further investigation revealed she had Tetralogy of Fallot, which means that blood with less oxygen was going around her body, and she would die if she did not have surgery before she was one. The condition was spotted because Lucy had two holes in her heart, causing a very large murmur.
While research over the past 50 years has seen major improvements in the survival of children born with congenital heart defects, much more work is needed to ensure they have the greatest chance of living a long and healthy life, the British Heart Foundation’s medical director has said.
In the East of England 37 children born with heart defects die before their first day of school each year statistics from the BHF have found.
With thousands of children starting school in September, the charity is launching Bag it. Beat it. to raise vital funds for research so more children can make it to school.
Lucy and her family, of Greenways Crescent, are supporting the campaign, which is urging the public to donate bags of their unwanted items to BHF shops
Lucy’s mother Amanda Prentice, 37, who is a supervisor at Farmfoods in Bury St Edmunds, said: “The more research and awareness that can be raised about congenital heart defects the better.”
She added: “It’s something that’s not in the public eye and that’s a real shame for something that has no cure and is a really horrible thing to have. I think that’s also because it’s a very, very invisible disease; to look at Lucy you would never know there’s anything wrong with her.”
Miss Prentice, who also has a nine-year-old daughter, said finding out that, without major open heart surgery, Lucy would not live to see her first birthday was the “single most horrific thing that I have ever been told”.
She said following surgery Lucy really started to flourish, but her development was still slower than normal.
“She’s such a happy girl, you would never know there was anything wrong with her, but she does get tired easily. Sometimes she gets blue around the mouth, which is something we have to keep an eye on because as she gets older she will outgrow her surgery, but at her last cardiology appointment they said everything looked great.”
Miss Prentice described the support the BHF had given the family as “invaluable”.
Heart problems remain the most common defect at birth, with 4,000 children in the East of England going to school every day with a heart condition they were born with.
The BHF says further and faster research will help more children survive with a heart defect and improve the quality of life for those undergoing life-changing surgery.
•To get involved in Bag it. Beat it. fill a bag with good quality clothes, shoes, books, handbags, DVDs, CDs, bric-a-brac and children’s toys and take it into a BHF shop.
To find a shop or to book a free collection of unwanted items visit bagit.bhf.org.uk or call 0800 915 7000.