Heart Transplant Program
Waiting for your child's organ
Waiting for your child's organ
Waiting for an available donor organ is often the most stressful time for our patients and their families. Please remember that we are always here to offer you support and resources should you need it.
1. It’s important that you always leave a number where you can be reached if you’re away from home so our transplant team can reach you at all times.
2. When an organ becomes available, you’ll need to get to Boston Children’s within two to three hours. Keep your packed hospital bag handy—including an extra 24-hour supply of your child’s medications—and arrange transportation to the center in advance. We can help with this if you come from a long distance away.
3. If you’re organizing your own transportation on the day of surgery, consideration must be given to the possibility of inclement weather, distance and rush-hour traffic.
4. Depending on how far you live from Boston Children’s, you may need to relocate to be closer to the hospital if you can't get to the hospital within two to four hours of our call.
Plan well in advance for other factors including:
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Baby-sitting/child care for your other children
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An alternative transportation plan in case the person driving you is unavailable
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Phone calls to family members—we suggest you call one family member so they in turn can contact other family members
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Packing a bag for the hospital stay. This may include: toiletries, pajamas, personal items (pictures, favorite blanket, stuffed animal).
Notifying you of a potential match
When an organ that seems to be a good match for your child becomes available, we will notify you by phone or pager. You’ll be asked to come to the hospital immediately.
When you receive the call to come to the hospital, be prepared to:
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Ask about any medications your child should take before coming to the hospital
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Let us know if your child has a temperature or is currently sick
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Not allow your child to eat or drink anything after receiving the call
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Leave your house as soon as possible
Keep in mind that it is possible that you may be sent back home if one or both of the following things occur:
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The team discovers a problem with the new organ.
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The team finds that your child has a condition that could jeopardize his health or the transplant’s chance of success.
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