If your child has just had an organ transplant, the last few months -- maybe many more -- have probably been scary and exhausting for your whole family.
But things are probably getting a lot better. As your child recovers, you're likely to see a big improvement. You may have noticed it already. And the long-term prospects are good, too. Most children who have transplants go on to live pretty normal, healthy lives.
Still, many parents in your position feel overwhelmed by their new responsibilities. Your little organ recipient will have a lot of doctor's appointments that you need to keep. You have to watch out for side effects and other problems. You have to learn the names of a dizzying number of medications and keep your child on a complicated dosing schedule. It's not always going to be easy. But remember, you're not alone. In addition to your child's surgeon, you have a whole team of health care practitioners taking care of you.
They'll all be working to help your family adjust and return your child to a normal life.
Here are some other tips for parents of children with transplants:
- Be open and honest. It's key that you be reassuring but honest with your child about their organ transplant. They will be frightened if no one explains what's happening. Talk about why a transplant was needed and explain what the medicines do. As your child gets older, go into more detail.
- Stay positive during difficult times. Your child may run into some complications after the transplant. It's not that uncommon. So stay optimistic, both for your own sake and your child's. Remember, children take their cues from adults. If you seem afraid or anxious, your child will, too.
- Stay organized. 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 doses. Always refill prescriptions early. Schedule and keep regular checkups.
- Know when to see a doctor. You should teach your older children what side effects and signs of rejection to look out for. But 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 out by their health care provider.
- Consider temporary home schooling. Most kids with transplants go to school like anyone else. But for a time right after the operation, they'll be more susceptible to infection. You may need to keep them away from other kids. In cases like these, home schooling might be a good idea. Some children may also need to be 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 tough. 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. Talking about the experience can help a lot.
- Help your child meet other kids with transplants. Even though thousands of children in the U.S. get transplants every year, your child may feel alone and strange. So help your child meet some other kids in their position. For instance, look into special summer camps for kids who have had transplants.
- Encourage your child to be physically active. The day your child tells you that they want to try out for the basketball team, your first reaction might be an emphatic no. After all they have been through, you just can't stand the idea of them taking any risks. But unless their doctor has a problem with it, think again. It's natural for you to worry. But kids with transplants aren't so fragile. The exercise will be good for them. And they can learn to be part of a team, make friends, and get a chance to excel.
- Help your child keep a healthy weight. Children may gain weight after a transplant, just like adults. Since being overweight can pose special risks to kids with transplants, don't ignore it. Talk to your healthcare team about getting on a new meal and exercise plan.
- Gradually give older children more responsibility. As your kids get older, you have to give them more control over their health. Like it or not, your child will take charge of their medicine at some point. Letting go of something so important can be scary for any parent. Try to head off problems by talking openly. Think about ways that you can gradually give over some control. Involve your child's health care team in the process. Showing your child that you trust them can encourage your child to behave responsibly.
- Talk to your teenager about risky behaviors. While teens may be rebellious with their parents, they may feel driven to conform at school. But the desire to fit in can cause problems. Drinking or using drugs can be a grave risk for a teenager with an organ transplant. Other forms of teenage rebellion can be dangerous too. For instance, body piercing or tattoos can be risky for people with suppressed immune systems. So before you run into problems, talk openly with your child about these risks. Peer pressure is powerful, but your child may have more restraint than you expect. Remember, your child really doesn't want to get sick either going through a transplant.
- Join a support group. A support group can be great for your whole family. It gives you a chance to meet with other parents who live with the same worries you do. And it gives your son or daughter a chance to meet children who are also living with a transplant.
- Take care of yourself. Caring for a sick child can be exhausting, frustrating, and frightening. You need to give yourself a break sometimes. If you don't, you'll be too frazzled to help much, anyway. Have a network of friends and family that you can talk to when you need help. Get one of them to take care of your child every once and awhile. Take an afternoon off or a night out. Just a little time away can make a difference.