This page explains what to expect while you wait for a donor heart.
How should you care for your child while you wait for a donor heart?
Keeping your child as healthy as possible before the heart transplant is very important. In particular, you need to make sure your child eats healthy foods and stays active. Your child needs physical activity and exercise to keep the joints moving and the muscles strong.
Your child's clinical dietitian will help you choose the right foods to keep your child as healthy as possible before the heart transplant. Your physiotherapist will help your child stay as active as possible before the transplant.
What if your child gets worse?
If you are worried about your child's condition during the wait for a donor heart, call your cardiac clinic nurse. They will contact your child's cardiologist to confirm next steps.
What if you don't live near the hospital?
If you do not live near the hospital that will perform the transplant, you may need to move closer to the hospital while you wait for a donor heart. The transplant team assesses each patient individually and makes recommendations about the need for family relocation. If this is necessary, there are multiple resources available to help you with this.
Will your child need to wait for the donor heart in hospital?
Depending on the severity of the condition, your child may need to stay in hospital while they wait for a heart. The transplant team will also help you make sure your child is in the best possible health at all times in case a heart becomes available. You will be alerted immediately when a suitable heart is available.
Who cares for your child while waiting for a donor heart?
You child's cardiologist will still be the main doctor caring for your child's heart problem while you wait for a donor heart. Your cardiac clinic nurse will know that your child is waiting for a heart transplant. While your child waits for a heart, you will see your transplant nurse from time to time. If your child's condition is more serious and they cannot be cared for at home, they will be looked after in the hospital.
How long will your child need to wait for a donor heart?
There is no way of knowing how long your child may have to wait for a donor heart. Your child will be put on a waiting list and will get a donor heart when an appropriate one becomes available. The wait for a heart could be anywhere from days to months, depending on your child’s size and blood type and how sick your child is. This will all be explained to you in detail if your child gets listed for a heart transplant.
Unfortunately, not many transplant organs are available. In Canada, about one in four people die while waiting for an organ transplant. There are only four donors for every one million people in Canada.
You and your family may find the time you spend waiting for a donor heart very frightening and difficult. This is particularly true if your child's condition gets worse. Your social worker will help you to plan for this stressful time.
What happens when a donor heart becomes available?
The hospital will call you or page you. If your child is not in the hospital, you will need to come to the hospital as soon as you can so that the staff can prepare your child for surgery. Different members of the medical team will help get your child ready for surgery.
Once at the hospital, your child will:
- get an IV
- have their blood tested, and may have other tests as well
- have a bath or shower
- not be able to eat or drink anything
The surgeon, transplant cardiologist, anesthesiologist, and nurses will see your child.
What if the heart turns out not to be right for your child?
Sometimes, after you have been called to the hospital, the doctors decide that the donor heart is not suitable. This can be very disappointing, but it is more important that the donor heart be suitable. This is best for your child's health.
If this should happen, your child's name will stay on the waiting list and the search for a suitable donor will continue.
Is it possible that your child could get the wrong organ?
The systems in place to match appropriate organs with appropriate recipients are very reliable. In extremely rare cases, there are reports in the media of patients who receive organs that are not suitable for them. Safeguards are continually implemented and expanded to ensure this does not happen. Isolated incidents such as these should not cast doubt on the very dependable systems that are in place.