Parents Unite To Tackle Congenital Heart Disease

Main Category: Heart Disease
Also Included In: Pediatrics / Children's Health
Article Date: 09 Mar 2006 - 0:00 PST

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A major international conference discussing care of children born with Congenital Heart Disease, hosted by the Department of Paediatric Cardiology and Psychology at the Royal Belfast Hospital for Sick Children (RBHSC), opens today at Malone Lodge.

The conference will focus on the psychological and educational outcomes for children born with heart problems and the effect on their families. One hundred and forty delegates from Europe, North and South America will attend this meeting, a first of its kind in the United Kingdom.

During the conference the launch of the DVD, Surviving Congenital Heart Disease: The Parents' Stories, will bring to light how families cope with Congenital Heart Disease. The aim is to inspire hope, reduce a sense of isolation and help provide a roadmap for coping with future challenges associated with the disease.

Denise Gracey, whose son Rory suffers from complex heart disease, adds "Children like Rory (who is 7 in April) are starting to come through this. The care they receive is absolutely crucial. Parents have a lot to learn - even simple things like the amount of exercise they should get in the playground and food that is good for them."

She continues, "This conference will be fantastic as it covers every aspect of care at home and school. Rory stood up in front of his school and explained his illness so all his friends are now aware of it and ask him lots of questions. They think it is class and see it almost like a badge of honour."

A unique aspect of the conference is the combined participation of professionals involved in the care of children with heart conditions, parents of affected children, and patients who have had successful treatment. It is designed to be an open house debate between professionals, patients, and their families.

During the conference a team of clinical researchers from the RBHSC will present their findings, which suggest that a new programme of psychological intervention can improve infant development and feeding in babies born with Congenital Heart Disease. In addition, they conclude that mothers who undertake the new programme show reduced worry and anxiety levels along with improved coping abilities compared to mothers who do not.

Consultant Paediatric Cardiologist, Dr Frank Casey, said "Our research shows that this new programme of psychological intervention during the very stressful period after the birth of a baby with congenital heart disease can help parents cope better and lead to an improved outcome for both them and their baby."

Congenital Heart Disease is the most commonly occurring congenital abnormality. With successful modern surgery the majority of those affected have a good outcome and live to adulthood.

Royal Group of Hospitals and Dental Hospital Health & Social Services Trust
Grosvenor Road
Belfast BT12 6BA
UK
Tel: 028 90634115
Fax: 028 90245281
http://www.royalhospitals.n-i.nhs.uk

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