What to Tell Friends and Teachers

During the waiting time, you may choose to discuss your plans with friends, your child’s friends, teachers and classmates.  Some people will show genuine caring; others may ask intrusive or insensitive questions or “smother” your child with attention.

Many families let friends know
how they can be helpful, such as:

• Care for your other children, ideally in your home.
• Help your other children maintain as normal a routine as possible while you are at the hospital.  (List their daily patterns and activities for these friends.)
• Bring your other children to visit you, and their sibling, at the hospital when possible.
• Plan special treats for your other children who may be feeling lonely, worried, even jealous.
• Bring you homecooked meals if you are staying at the hospital.
• Make brief visits.  Long visits may be tiring for you and your child.
• Handle the family’s laundry while you are at the hospital.
• Bring meals for your family when you return from the hospital and are busy tending to your child.

Talk with your child about what he wants other children to know.  One option is simply to say that he is waiting to have an operation to fix his heart or lungs, that his heart muscle is shaped differently or doesn’t squeeze strongly enough, or that his lungs aren’t as stretchy as they should be.

If your child is old enough to understand, or prefers to discuss his hew heart, help him to handle questions that may arise, such as:

Where will the new heart (or lungs) come from?

Most likely, from a child who dies in a car accident.

What will happen to his or heart?

Doctors will examine the old heart to try to find out why it made your child sick.  Sometimes what doctors learn from this can help other children.

Will the operation hurt?

Tell your child that special medicine, called anesthesia, takes away any feelings during the operation.  When it is time for him to wake up after the operation, the doctor stops giving the anesthesia.  Your child may feel sore and uncomfortable when he wakes up, but there are medicines to help him feel better.

Could he die?

Even grown-ups think about dying when they have an operation.  Your child is having this operation because doctors and nurses feel it gives him the best chance to live a normal life.

Will he be the same person after the operation?

Yes, your child will be the same person.  He will feel stronger and healthier because his new heart will give him more energy.

What to say if he is afraid?

It will be helpful to find out what your child fears.  When children are afraid, they need information to reassure them.  Ask your child what he is afraid of.  If you don’t know the answer, as a member of the transplant team or hospital staff to assist you.

Let your child’s teacher know how long he will be out of school (minimum), and that sending homework to the hospital will help your child feel a part of things, focus on this normal life activity and make returning to school easier.  Tell the school that a teacher from the Child Life program at the hospital can assist your child and help arrange for tutors if needed.