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Congenital heart defects are structural problems with the heart present at birth. They happen because of incomplete or abnormal development of the foetus' heart during the very early weeks of pregnancy, often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.

 

The cause of CHD is still unknown

Congenital Heart Defects are usually, but not always, diagnosed early in life.

Rarely heart disease is not congenital but may occur during childhood such as heart damage due to infection. This type of heart disease is called acquired; examples include Kawasaki disease and rheumatic fever. Children also can be born with or develop heart rate problems such as slow, fast, or irregular heart beats, known as "arrhythmias".

 

Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.

 

Why  congenital heart defects occur  we do not know most of the time. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects.

Research is still very much needed especially for those heart defects that are still very  difficult or impossible to repair.

 

Severe heart defects generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.

 

Having a CHD can be a serious problem.

Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease each year as die from all forms of childhood cancers combined.

 

The presence of a serious congenital heart defect often results in an enormous emotional  strain on  families.Most  people that are not affected themselves do not realise what it means to have a child with a CHD or what it means to live with a CHD.

 

 

Awareness about CHD holds the key to several equally important things:

 

- More funding for research so that hopefully one day there will be no more fatalities.

 

-To justify the need for a standard screening in newborns which is  necessary to decrease the      number of children that are sent home without a diagnosis

 

- To make people understand what CHD really means and what  effect it has on families.

 

 

 

 

CHD-NI is aiming to raise awareness of Congenital Heart defects, and to provide information and support .

 

Every parent wishes that their children will be born healthy but if this is not the case it brings a lot of stress and worries. You find yourself lost in a whole new world which add more fear and questions about what the future will bring for your child.

 

Being able to share your worries and find appropriate information is essential to find a way to cope with a diagnosis.

We have an online support group  were you can meet other parents or adults and share experiences.

 

You can contact one of the parents at  CHD-NI any time  if you have queries

 

 

 

 

 

 

 

 

 

CHD-NI beliefs in working together with orgaisations that have similar goals.

 Currently we work closely together with:

 

 

 

 

 

 

A website set up to provide information about CHD and raising more awareness

 

 

 

 

 

 

 

a parent-led voluntary charity that provides practical and emotional support to families affected by CHD.

 

 

 

 

We organise fundraising events for the following causes:

 

 

and CHD related causes/organisations

 

 

E-NEWSLETTER in conjuction with CHD-UK

 

 

 

 

 

 

 

 

 

 

 LAST UPDATE : 20 January 2012

 

 

 

 

 

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