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Tips for parents of children with organ transplants

Having an organ transplant can often save the life of a child. After anxiety waiting for a donor organ, attention then turns to getting on with having a healthy life with the new organ.

The child's care will still be managed by a team of specialists, and there will be side-effects to look out for, as well as life-long medication to be taken to help avoid the child's body rejecting the new organ.

Simple measures like washing hands to help avoid infections are important for all children, but are vital for children after a transplant.

Here are some tips for parents of children after organ transplants:

  • Be open and honest. It is crucial that you are reassuring but honest with your child about their organ transplant. They will be frightened if no one explains what's happening. Talk about why they needed a transplant and explain what their medicines do. As your child gets older, go into more detail.
  • Stay positive during difficult times. It’s not uncommon for your child to run into some complications after the transplant. It’s important to remain optimistic, both for your own sake and your child's. Remember, children take their cues from adults and if you seem afraid or anxious, your child will be too.
  • Stay organised. As the parent of a child with a transplant, you really have to keep on top of things. Use timers and alarms to remind you when to give medication doses. Always refill prescriptions early and book and keep regular check-ups.
  • Know when to see a doctor. You should teach your older children what side effects and signs of rejection to look out for. It can be tricky with very young children who can't speak for themselves. In babies, the only outward signs you might see are fussiness and changes in eating. If you have any doubt, err on the side of caution. Get your child checked by their doctor.
  • Consider temporary home schooling. Most children with transplants go to school like anyone else. For a while after the operation, they'll be more susceptible to infection. You may need to keep them away from other children. In cases like these, home schooling might be a good option. Some children may also benefit from being away from school during a few months of flu season.
  • Make your child's return to school as smooth as possible. Going back to school after an organ transplant can be difficult. Your child may have been away for a long time. It may be hard to reconnect with classmates. So be there for your child. Work with your transplant team. Talk to your child's teacher. Encourage your child to reach out to friends. Just talking about the experience can help a lot.
  • Help your child meet other children with transplants. Even though hundreds of children in the UK get transplants every year, your child may feel alone and strange. So help your child meet some other children in the same position. For instance, look into special summer activities for children who have had transplants.
  • Encourage your child to be physically active. The day your child tells you that they want to try for a place in the football team, your first reaction might be an emphatic “no”. After all they’ve been through, you just can't face the thought of them taking any risks.
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