An antenatal pack for couples expecting a baby with single ventricle heart disease is now available free of charge throughout the UK thanks to the charity Little Hearts Matter. It is being launched in time for Children’s Heart Week which starts on May 9th.
It has been welcomed by the Fleming family from Yorkshire whose two-year-old daughter was born with one of the congenital heart conditions, Hypoplastic Left Heart Syndrome. Caitlin was seven weeks old when Joanne and her husband got the diagnosis and were told her outlook was poor.
Normally babies born with the condition must have open-heart surgery within hours or days of birth. Caitlin had defied all the odds by surviving so long. Joanne said: “Looking back, I would have wanted to know earlier because it would have saved all that stress. She was not feeding properly or sleeping. I kept going back to the doctor. I wanted them to reassure me but when they did I was not reassured because I knew something was wrong.”
All children born with a single functioning ventricle, instead of the normal two, require complex surgery to survive into adulthood as well as a high level of medical support throughout life. The antenatal pack has been compiled by Little Hearts Matter as part of its remit to support families with a baby or child with half a functioning heart, starting from the moment of diagnosis.
Included in the Little Hearts Matter pack, produced in response to families’ requests for support and information, is a DVD featuring interviews with health professionals, parents, and the Chief Executive of Little Hearts Matter, Suzie Hutchinson, a former cardiac liaison nurse.
Suzie said: “The pack gives a fair and unbiased outline of the options parents face when they have a diagnosis of single ventricle heart disease. It empowers parents by giving them the knowledge they need to support their decision-making on the treatment for their unborn child.”
Interviewed on the DVD are four couples who proceeded with their pregnancy after a diagnosis and now have a young child as well as a mother who decided to terminate. The pack and DVD have been funded by a trust set up in memory of a baby who died before a diagnosis was made.
To view a sample of the DVD click here. You can download the antenatal booklet here.
Currently between 50 and 60 per cent of babies with single ventricle heart disease are diagnosed antenatally but with improved training and awareness, the number could be much higher. Little Hearts Matter supports the work of Tiny Tickers, a charity which works to improve early detection of heart disease.
Suzie continued: ”Parents who know at birth that their baby has a heart defect have an opportunity to understand their heart problems before they arrive. Because the treatment risks are high, they know that this may be a very precious time with their child and they want to get fully involved with the baby’s care.”
Note to editors
Little Hearts Matter’s antenatal resource and DVD is being launched to coincide with Children’s Heart Week which takes place between May 9th-18th. It is available free of charge to hospitals which can place orders through the website: www.lhm.org.uk
Little Hearts Matter depends on funds raised by members, friends and supporters to continue to deliver support and information. The next event organised by Little Hearts Matter is “Dress up, dress down, dress silly” and more information is available on the website.