About 47% of babies born with Down's Syndrome also have congenital heart conditions, which means nearly every day in the UK one family is faced with these concerns when their baby is born, even if they knew beforehand.
Obviously there are things they need to know and learn about Down's Syndrome, but in the early days for most people the focus is on the heart problems as these are the things that often affect the baby's health and growth early on. There are decisions to be made about treatment and families usually find that at least for the timebeing, Down's Syndrome becomes less of an issue to worry about - it will after all always be there and there is no cure, whilst for most heart defects there are options for surgiucal repair if needed.
So having a baby with Down's Syndrome who also has heart issues is somewhat different from having a baby with Down's Syndrome without those problems. And of course having a baby with heart problems who also has Down's Syndrome is different to having a baby who just has heart problems, parrticularly as the most common heart defect associated with Down's Syndrome is fairly rare in babies who don't have the syndrome.
Hence the need for an organisation to provide support and information specifically relating to these combined issues, where personal experience can be used to help make the journey a little easier for families that follow later. It all began with this realisation in 1988 and the group has grown and adapted to families needs ever since.