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Congenital Support Groups


Coping and support

Although many children with congenital heart defects can live a full life, and achieve many steps in their development, social and academic field, there are few aspects of living with a Congenital Heart Disease that needs to be taken under consideration.

Developmental difficulties

Some children who have congenital heart defects may have had a long recovery time. Their development may lag behind that of other children their age. Some children's difficulties may last into their school years, and they may have difficulties learning to read or write. Some conditions carry more incidences of such development difficulties, as the condition could be severe, and treatments spread over a long period of time.

Support groups

Having a child with a serious medical problem isn't easy and, depending on the severity of the defect, may be very difficult and frightening. In the UK there are several local and national support groups with specialist teams and parents with similar conditions able to offer support. These can be found below:

Local charities

Liverpool
https://alderhey.nhs.uk/about-us/alder-hey-childrens-charity
https://alderhey.nhs.uk/services/heart-centre-alder-hey/team-1c

Glasgow
https://www.glasgowchildrenshospitalcharity.org/

Dublin
https://heartchildren.ie/

Newcastle
https://www.chuf.org.uk/

Leeds
https://leedscongenitalhearts.com/child/team

Leicester
https://www.heartlink-glenfield.org.uk/
https://www.keepthebeat.co.uk/

London
GOSH: https://www.gosh.org/
Evelina: https://echo-uk.org/about-us/
Brompton: https://www.rbhcharity.org/

Southampton
https://www.heartbeat.co.uk/

Bristol
https://www.swswchd.co.uk/en/page/charities

Birmingham
https://www.bch.org.uk/


National charities

Children Heart Federation: https://www.chfed.org.uk/

The Sommerville Foundation: https://thesf.org.uk/

Little Hearts Matter: https://www.lhm.org.uk/


Other patient information resources

BHF Congenital: https://www.bhf.org.uk/informationsupport/conditions/congenital-heart-disease

Children Heart Federation support: https://www.chfed.org.uk/how-we-help/other-organisations/