Parents of children with congenital heart disease

Messages to other parents

We asked the parents we interviewed what advice they would give to parents who had learned that their child or unborn baby had a congenital heart defect.

Here is what they said:

  • If your child has just been diagnosed with a congenital heart defect, try to be positive even though it may seem like the end of the world.
  • Babies and children are much more resilient than you would expect.
  • There are many successful treatments available nowadays for children with heart conditions.
  • It may mean being on an emotional roller-coaster, over several years in some cases, but in most cases there is light at the end of the tunnel.
  • Even when there is a possibility that your baby may not survive it is important to stay positive and have hope.
  • It may not be as bad as you fear, your consultant may have given you the worst case scenario.

Finding out during pregnancy
  • Try to accept the diagnosis, visit the hospital and find out as much as possible about what to expect before the baby is born.
  • Though it is difficult knowing during pregnancy it does mean that the best support is available as soon as the baby is born.

Information & Support

  • Find out as much about your child's illness as you need; if you don't feel comfortable doing this, see if someone else will do it for you.
  • Never be afraid of asking doctors what you think might be a silly question. Ask for information to be explained if you haven't quite understood it.
  • Write information down during consultations. 
  • Taking a first aid course may give you confidence when caring for your child at home.
  • Don't try to cope alone. Make use of the help and advice available from health professionals, support organisations and from other parents.
  • Find time to talk to your partner and to make time for each other as a couple, especially if you are a mum preoccupied day and night with your ill child.

Coping as a parent

  • Parents need to be strong advocates for their child, making sure that they are getting the best possible advice about the best possible care.
  • Parents should trust their own instincts when they think something is wrong with their child and when they are not happy with the medical advice they are being given.
  • You can feel very helpless when your baby is being looked after in hospital. You can feel more in control if you are providing breast milk to be fed through his naso-gastric tube. If you can understand what is being done for your child, and why, you can make sure it is done properly.
  • Don't underestimate the impact on your life and the level of organisation needed when you are trying to keep your family life as normal as possible for your other children, whether your child is in hospital or at home.
  • New mums must not forget to look after themselves. This can easily be forgotten when your newborn baby is ill.
  • Enjoy your child 
  • Don't let his illness stop you enjoying your baby, try not to be overprotective or treat him as disabled.

 Last reviewed December 2014.

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