Family Support


Congenital heart conditions are the most common birth defect in the UK. Around 5000 babies are born with a malformation of the heart each year. Of these, two out of three will survive beyond infancy. A further 1000 children will acquire a heart condition because of an illness or medical treatment that damages their heart.

 

Heart children are often small for their age and those who have surgery will have physical scars, but in other respects, it may not be obvious that they have a health condition. Whatever challenges they face, with interruptions to the usual childhood activities of playing and spending time with friends, going to school, going on holiday, growing up and looking forward to the future – heart children often talk about how they want to be treated like other children. And with good planning, support and creative thinking, heart children can share in the range of activities most of us take for granted.


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Transition of young people at The Heart unit

  

As children with heart problems grow up they will eventually need to be seen by health service professionals who specialise in adult health. In the past there was very little, if any, preparation for the families and young people before their transfer to adult services. However, the Heart Unit at Birmingham Children's Hospital, has introduced changes to improve and help the transition process.

 

Both the young person and their parents need to be prepared for transition and eventual transfer to adult services. Planning should start well in advance of transfer, preferably starting around the age of 12 or 13 years depending on the childs maturity. The young person needs to understand their condition, any symptoms, how to recognise changes in their symptoms, and how to listen to what their bodies are telling them. As a result, they should then be able to take appropriate actions. They will need to know how to seek help and how to work together with the health professionals involved in their care.

  

They need to be encouraged to take responsibility for their own medication at the earliest age possible. The Cardiac Liaison team and the clinic nurses are available to play a part in educating the young person and their families in adapting to this gradual change from childhood to adult life.


At the Adolescent Clinics held at Birmingham Children's Hospital, the Doctor will see a child alone for part of the consultation and parents will be involved for the rest. If the child is to be seen at one of these clinics, the child and parents will receive a letter from their cardiac consultant, explaining about the clinic before their visit. At the Adolescent Clinic, relevant information will be available to help educate the child on all aspects of their condition: this will include health and lifestyle planning.

 

In the later stages of transition, anyone affected by complex, ongoing conditions will be introduced to a member of an adult team from University Hospital Birmingham (U.H.B.), which is made up of consultants and a G.U.C.H.(Grown Up Congenital Heart) Clinical Nurse Specialist. This introduction will usually take place at the last visit to the Childrens Hospital. At this joint clinic the child and parents will be given details of their next clinic appointment at U.H.B. and be given details of contact numbers and information about who can be contacted in the interim. Written summaries of past treatment and operations will be given for the child's handheld records before their transfer. Young people with less complex problems will be seen at their local cardiac units, but will still receive the same help during the transition period.

 

The transition can be a very worrying time for all concerned, which is why the U.H.B. Team is available at all times during that time to help the process go smoothly and to help the child and their family look to the future.