To most families, the news that their newborn baby has Down's Syndrome comes as a devastating blow, not least because they know very little about the condition and what it will mean to their child's future. Once they have had time to take the news in, obtain more information and meet with other parents, they have a more realistic view of what parenting a child with Down's Syndrome will be like. Armed with this new awareness, the majority of parents readily accept the additional responsibility of having a "special" child, and all the extra work that entails.

Sadly, for almost half of these parents, there will follow even more devastating news - their child has a congenital heart defect. For some this will cause little problem, but for the majority it is a serious, potentially life threatening condition, which requires major open heart surgery. Such surgery inevitably carries risks, and parents face the dilemma of agreeing to an operation which will help ensure a better quality of life for their child, but may also cause the child's death.

Other parents will be told that their child's condition is inoperable, and may question whether this diagnosis is based on prejudice because their child has Down's Syndrome. Some will ask for a second opinion and may well get a different diagnosis, and offer of surgery. The others will have to come to terms with the fact that there is no treatment to save their child, and that sometime in the future they will have to cope with bereavement.

And as if facing these problems weren't enough, many families will be coping with a baby whose feeding is poor, weight gain slow and who may have recurrent chest infections. In some babies these problems will be so acute that the baby is in hospital for frequent and prolonged periods, during which the parents have to try to carry on as normal a life as possible for the sake of their other children.

All these worries inevitably place a strain on a family, both financially and emotionally. There are statutory bodies who can help, and families gain a great deal of support from the doctors and nurses involved with the care of their child, but there is still a huge sense of isolation - a feeling that they are the only family who has ever been through this. It is a great comfort to them when they find that there is a charity which offers support and information specifically aimed at them - that they are not alone.

The Down's Heart Group was set-up in 1989 by a small group of parents who felt there was a lack of provision for the very specialized needs of their families. Everyone involved with the Group is a parent, either natural, adoptive or foster, of a child with Down's Syndrome and a heart problem, so each has some first hand knowledge of the problems families encounter, and can understand the anxieties of parents who are now facing them.

The Group maintains a computerized database of information about all member families, and now with over six hundred members, it is nearly always possible to offer a family contact with other families who either live locally, or more importantly, who have faced a similar combination of problems. Many parents find this opportunity to talk over concerns with someone who truly understands is an invaluable help.

Another part of the work of the Down's Heart Group is the provision of information which it does by production of straightforward leaflets, and by way of its newsletter which is distributed three times a year, not only to members, but also to an ever increasing number of professionals who have an interest in children with Down's Syndrome and heart problems. The newsletter includes articles, letters and news as well as parents own accounts of what has happened to them with their Down's Heart child.

The Group also holds an Annual Conference, open to both members and professionals, at which a number of guest speakers come along to share their knowledge and experiences. Parents find these meetings an opportunity not only to learn about different aspects of their child's condition, but also to meet up with other families. It is also a time when professionals can meet parents outside of the constraints of the hospital environment, which can simplify communication allowing a greater insight into the needs of families.

The old adage says "a problem shared is a problem halved", the Down's Heart Group doesn't claim to be able to take away a family's problems, but its members obviously feel that it helps to share them with others who understand. This is reflected not only in the number of members who remain to give support to new families long after their child has had successful heart surgery, but also in the families who lose a child yet continue their membership to help others.

For more information or if you know someone who may benefit from our help, please contact:

The Down’s Heart Group
http://www.dhg.org.uk/

PO Box 4260
Dunstable
LU6 2ZT
Email: info@dhg.org.uk
Director: Penny Green
Phone/Fax: 0845 166 8061