Somewhere in the U.S. today, a mother sings lullabies to her baby, fitful in a hospital crib, his tiny belly swollen with fluid and enlarged organs. Another mother prepares a sterile field, praying the IV infusion will keep her baby out of the ICU. Yet another continually checks that every phone ringer is turned on, her family waiting for the call that a life-saving organ is available.
I know this because I have been each of those mothers.
Five years ago, my husband and I welcomed our fourth child with joy that soon turned to anguish when we learned his liver, responsible for hundreds of vital functions, would fail without urgent intervention. Our son was born with biliary atresia, a rare, progressive liver disease with no cure.
And yet, because of the modern miracle of organ transplantation, there was hope.
My son initially received excellent care, but by his first birthday, complications from end-stage liver disease placed him on the national organ transplant waitlist. Our days were marked by his round-the-clock medical needs. As his disease progressed, his "organ allocation score," meant to reflect the liver's health, climbed until he was near the top of the waitlist. Still no phone call, no adequate offers.
I thought about the other children waiting: 1,142, according to the 2022 Organ Procurement and Transplant Network (OPTN) data. Their health care teams and my son's were advocating fiercely, but these vulnerable children are part of a larger ecosystem shaped by governance structures, allocation formulas and policy limitations that families and care teams cannot control.
Commendable efforts to modernize this system are underway, following the 2023 bipartisan Securing the U.S. Organ Procurement and Transplant Network Act. And yet, children still account for the most deaths on the waitlist -- an unnecessary result of complex guidelines that disadvantage the youngest candidates and a dearth of policy to regulate technological advances that can save more lives.
After months of agonizing and waiting, the phone finally rang. An anonymous living donor was a match. One man, entirely unknown to us, soon lay in an operating room adjacent to my son's, his selfless act lifting my baby from the brink. Surgeons, anesthesiologists and scores of nurses worked steadily hour after hour, tackling one high-precision task after another to preserve life, some of their modern, specialized tools measuring as small as 0.7 millimeters. The magnanimity of it all is a marvel of our times.
But surgical advances extend beyond living donor liver transplants. They can also split a deceased donor liver -- the smaller portion of the liver offered to a child and the larger to an adult. U.S. policy has not kept pace with these innovations, leaving many children desperately in need and waiting, especially those for whom a living donor transplant is not available.
Today, organ procurement and allocation policy fall under the OPTN and the Department of Health and Human Services, operating under the 1984 National Organ Transplant Act. This landmark piece of legislation enabled the creation and regulation of a functioning transplant system. However, the act and its accompanying final rule lack the language necessary to ensure appropriate organ access for children. Its original task force could not have anticipated the scale of today's pediatric need nor the medical advances that make survival possible for so many more children.
The adage "children are not little adults" unquestioningly extends to transplantation: as the 2023 Statement on Achieving Zero Waitlist Mortality by the Starzl Network for Excellence in Pediatric Liver Transplantation states: "Pediatric liver disease severity and mortality are not currently accurately modeled to superimpose children into a ranking system centered on adults."
The National Organ Transplant Act demands review; an appropriate and effective amendment will include an ethical mandate to protect and prioritize children and the establishment of a new task force convened to craft and implement best practice policy to that end.
Other nations have already acted. European countries mandate evaluation of livers for splitting, and Canada, France, the United Kingdom and Brazil utilize scoring systems that prioritize children on the waitlist -- efforts resulting in the near elimination of pediatric mortality without affecting adult mortality. They are saving babies' lives.
But in the U.S., our babies wait. Health care teams advocate for them, manage their complications, comfort their families and wait. Mothers wait, untangling IV tubes and filling syringes and praying their children will not succumb to it all. And when they do, families leave the hospital with the diaper bag full but the car seat empty. Instead of choosing a first birthday outfit, each of those mothers will choose one for burial.
Is the cause of death a diseased liver, or a flawed system? Too many of these children needing liver transplant have died -- 657 from 2004-2020 and growing.
We can change this. We have the precedent. We have the proficiency. America's children need a national policy.
Maria F. Bell is a patient and family advocate for children facing liver disease and transplantation.