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Transplant Journey

Evaluation

Our transplant journey begins with a thorough evaluation of your child. This process may take a few days or a few weeks depending on the situation.

Our clinical transplant coordinator will be one of the first people you meet. She will assist in scheduling appointments and diagnostic testing as you get to know the transplant evaluation team. Working closely with you, we will determine if transplantation is truly the best path of care for your child.

The Transplant Evaluation Team:

  • Transplant cardiologist(s)
  • Transplant surgeon(s)
  • Transplant coordinator
  • Dietitian
  • Social worker
  • Financial counselor
  • Behavioral health specialist
  • Pharmacist
  • Other specialists and hospital staff (i.e. nurses)

Financial Considerations

During your pre-transplant evaluation, your financial counselor will review:

  • Insurance information (or discuss options if you are uninsured)
  • Copay and potential out-of-pocket expenses related to the transplant surgery, long-term care and medications your child will need

Transplant Selection Committee

Once the evaluation is complete, our transplant selection committee will determine if and when to proceed with a heart transplant or whether to consider additional testing or treatment options.

Listing

If transplant is recommended, your child will be “listed”. This means their name will be placed on the United Network for Organ Sharing (UNOS) national heart transplant waiting list.

Four Categories

There are four categories under which a child can be listed:

  • 1A: A very sick child in the hospital requiring life support
  • 1B: More stable than a 1A child; may or may not require hospitalization but requires an IV medication to regulate heart function
  • 2: Stable child that needs a transplant but does not require hospital care
  • 7: A child that has been listed for transplant but is temporarily unable to receive a transplant

Waiting Times

While waiting times can vary considerably, patients normally have to wait anywhere from a few days to several months to receive a heart transplant. Our goal is to find the best possible match for your child to achieve the best possible outcome.

Special Circumstances & Accommodations

Many of our patients will be hospitalized and closely monitored during the entire waiting period.

  • Our social workers are available to help you deal with special circumstances (travel arrangements, arranging care of other children, etc.) that may arise.
  • For those who have to relocate temporarily to the Omaha area, the Rainbow House provides accommodations close to Children’s. There is no charge to stay at the Rainbow House, but a donation of $10 per night per room is suggested.

If your child is well enough to be home (or at the Rainbow House) while waiting for his/her new heart, your transplant coordinator will maintain close contact with you by phone.

The Transplant

Once a heart becomes available, you will be notified and asked to come to Children’s as quickly as possible (if your child is not hospitalized already). At the same time, a team from Children’s, including a cardiothoracic surgeon, will travel to the donor hospital to pick up and inspect your child’s new heart.

  • Since transplant surgery needs to be carefully coordinated between two hospitals, there is usually a several hours wait between notification and surgery. (Your child cannot have anything to eat or drink during this time.)
  • Our team, including our child life specialist, is here to help with any needs you and your family may have while waiting for surgery.

Preparing for Surgery

This process includes:

  • Additional laboratory work
  • Skin cleansing
  • Signing of consent forms

The surgery at Children’s will generally not begin until the traveling surgeon confirms the donor heart is acceptable.

In the Operating Room

  • Your child will be anesthetized.
  • Additional IV’s may be started.
  • A breathing tube will be placed.

The surgery will take several hours. Your transplant coordinator or a designated operating room staff member will keep you updated throughout the procedure. Upon completion of the surgery, the surgeon will come to the cardiac waiting room to speak with you. 

Immediately After Surgery

Your child will be transferred to the pediatric intensive care unit (PICU). You will be able to visit them about an hour later. Prepare yourself for the fact that your child will be hooked up to several tubes (including a chest tube and, likely, a breathing tube) and wires for monitoring and medication.

Infection Control

We have to be especially vigilant about infection prevention after transplant surgery. That’s because we intentionally weaken your child’s immune system with medication to prevent rejection of his/her new heart.

As a precaution against infection:

  • Your child will be placed in isolation in the PICU.
  • All visitors (except parents) and staff will be required to wash their hands and wear gloves, a gown and a mask.
  • Your child will also be required to wear a mask whenever leaving his/her hospital room.
  • No live or artificial plants will be allowed in your child’s room.
  • New stuffed animals, games and toys that can be disinfected will be allowed into your child’s room.

Length of Stay

The average post-operative stay is 2-3 weeks. You can anticipate about a week in the PICU. Once the team feels your child is ready, he or she will be transferred to the 5th floor for continued care.

At this point, your care team (nursing staff, pharmacist, dietitian, transplant coordinator) will really begin involving you in all aspects of your child’s care, teaching you the skills necessary to care for your child at home.

Accommodations

For those who have to relocate temporarily to the Omaha area, the Rainbow House provides accommodations close to Children’s. There is no charge to stay at the Rainbow House, but a donation of $10 per night per room is suggested.

Rooming-in

One of the final stages in discharge preparation includes rooming-in. Two caregivers will be expected to “room-in” with your child for 24 hours. During this time, they will be providing all of the care for your child.

After Transplant Care

Heart transplants in children are usually very successful and most children are able to lead relatively normal lives after their transplant. Initially, we will follow your child weekly, then every other week, at six-week intervals and then every three months.

Heart muscle biopsies are performed periodically during the first year after transplant. Usually a heart catheterization and biopsy will be performed every one to two years after that.

After your child is back home, we encourage you to call us anytime you have a question, concern or are unsure of something. A transplant team member or the on-call cardiologist can be reached anytime at 402.955.4350 or 1.866.467.9399.