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What to Expect if Your Child Needs a Heart Transplant

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What to Expect

One way that Seattle Children’s supports your child and family through this challenging time is by helping you understand as much as possible about the transplant process.

You most likely have many questions about Seattle Children’s and how to prepare your child for her clinic visit. Get more information about your child’s clinic visit, including:

  • Important things to do before the appointment
  • Tips on helping your child feel safer about the upcoming visit
  • Paperwork to remember the day of the appointment
  • Suggested questions to ask your child’s doctor
  • How to prepare for care at home

How does the transplant process start?

We accept referrals from your child’s primary care doctor, a specialist, a case manager or directly from you.

What happens before the transplant?

Your child will first receive a pre-transplant evaluation to determine if a heart transplant is best for her before we can begin working with the organizations that handle the organ donation process.

We will review of your child’s medical and surgical history and schedule an office visit with the transplant doctor and other members of the transplant team.

Once the evaluation is complete, your child’s case will be reviewed by the transplant team, who determine whether heart transplant is the best option for your child.

What happens once the decision to transplant is made?

If the team recommends a heart transplant for your child and you as a family agree, your child will be placed on the United Network for Organ Sharing (UNOS) transplant waiting list.

UNOS is the nonprofit scientific and educational organization that matches organs with recipients and collects and manages data about every transplant occurring in the United States.

What happens during the transplant surgery?

Preparing your child and yourselves for surgery may help reduce your family’s stress during this time.

Our team is committed to helping children who need surgery and their families cope well with the experience. We want you to know what’s going to happen each step of the way.

Learn more about what to expect if your child is having surgery including:

  • What to do once surgery is scheduled
  • Tips to help your child feel safer about the surgery
  • What to bring the day of surgery
  • What to expect the day of surgery
  • Helpful questions to ask your child’s doctor
  • How to prepare for care at home

Most heart transplantation operations last about 4 hours. During surgery, you will be asked to check in at the Cardiac Intensive Care Unit (CICU) and be given a pager so that staff in the operating room can keep you informed of how your child is doing.

There are many comfortable places to wait at the hospital while your child is in surgery.

What happens after transplant?

Patients begin their recovery in the Cardiac Intensive Care Unit (CICU) for an average of 7 to 10 days and then are moved to the Surgical Unit for approximately one to two weeks.

Find out what you need to know about your child’s stay at Seattle Children’s, including:

  • Things to do before your child’s arrival
  • Preparing your child for a hospital stay
  • What to expect during your child’s stay
  • Helpful questions to ask your child’s doctor
  • Information to help you after your child has been discharged

Once discharged from the hospital, your child will continue to visit the clinic for follow-up care.

A regular schedule of visits will ensure that your child:

  • Is recovering from surgery
  • Has no signs of infection or organ rejection
  • Is learning about and understanding how to take prescribed medicines
  • Is returning to an active, normal lifestyle

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