Longer Wait Times on the Pediatric Transplant List: You're Not Imagining It

As our kids head back to school and we all settle into new routines, many families in our community are facing a very different kind of “waiting for the bell”: longer wait times on the transplant list—especially for pediatric heart. If it feels harder right now, that’s not just in your head.

What’s driving longer waits?

1) A real shortage of pediatric mechanical support devices.

Mechanical circulatory support (like pediatric VADs/ “mechanical hearts”) helps many children stay stable while they wait. This year, national leaders formally acknowledged a temporary shortage of pediatric MCS devices and supplies and issued emergency guidance so affected children can still be prioritized appropriately. The goal: protect access to transplant while supply constraints are resolved. (optn.transplant.hrsa.gov)

In fact, the FDA added pediatric VADs to its device shortage list this summer, noting the shortage could extend into 2026. (Medical Design & Outsourcing). Just know your transplant teams are moving mountains to make sure your children get the best care possible despite all of this.

2) Donor registry headwinds driven by scary headlines.

Recent, widely shared stories have shaken public trust and led some people to remove themselves from organ donor registries. States and OPOs have reported unusual spikes in deregistrations after sensational news cycles, exactly the opposite of what patients on the waitlist need. (Newsweek)

3) Complex allocation + clinical realities.

Allocation policy is evolving to improve equity and transparency, and while those changes are important, the day-to-day reality is that kids awaiting hearts are a small, unique population with limited device options and a narrow donor pool. (For example, the Berlin Heart EXCOR remains the only FDA-approved dedicated pediatric VAD; supply or component issues can ripple quickly through children’s access to support.) (jhltonline.org)

The big picture: The system still saves lives

It’s important to hold two truths at once:

• We’re in a challenging moment, with documented device shortages and a hit to public trust affecting donation. (optn.transplant.hrsa.gov)

• The U.S. transplant system remains one of the world’s most effective, and continuous improvement is ongoing driven by OPTN, HRSA, OPOs, transplant centers, and clinical networks like ACTION. Most donations and transplants are safe, ethical, and life-saving. (UNOS)

  
  

How we move forward—together

Trust the process of oversight and improvement.

Governing bodies have already taken action on pediatric device shortages and continue to strengthen safety, accountability, and transparency. Investigations, hearings, and policy updates are part of making a strong system even stronger. (optn.transplant.hrsa.gov)

Keep telling the full story.

We need to balance scary headlines with real stories of hope and perseverance—of children waiting bravely and families navigating school drop-off, clinic visits, and homework all at once. Your voices help the public see why donation matters.

Invite facts back into the conversation.

When friends or relatives express fear about donation, remind them: donation follows strict medical and ethical standards, and rare incidents prompt immediate review and reform. A healthy, informed donor registry saves lives, especially children’s. (Some national outlets are already urging people not to deregister in response to fear.) (USA Today)

Ways you can help right now

• Share your lived experience. If your family is facing an extraordinary wait, and you’re open to sharing (even anonymously), your story can change minds. We would be honored if you shared your story with us.

• Send us your insights. This is complex and evolving. If you have professional expertise, lived experience, or resources we should include in future coverage, email us: contact@transplantfamilies.org.

• Encourage donation. A quick conversation, grounded in facts, can keep a potential donor from opting out in fear. Point them to reputable sources (OPTN, HRSA) for context. (optn.transplant.hrsa.gov)

What’s next from Transplant Families

This September piece can be the beginning of a bigger conversation. Give us your feedback and if the community wishes, we will carry forward with your stories of perseverance. If you are a family that has had a long wait and your child has received their gift of life, please contact us, so that you story can help others.