The human body is a machine, and like most complex contraptions, when something goes wrong it can impact every nut and bolt or nook and cranny.
By John S. Bynon, M.D.
If there’s a problem with the engine, fuel tank or oil filter, we go to the mechanic for overhauls or replacements. If there’s a problem with the heart, liver or kidneys, we may need surgeons to perform transplants—despite make, model or age.
More than 117,250 Americans are currently waiting for a transplant; approximately 1,700 are children.
Whether caused by a genetic disease, congenital defect, illness or accident, end-stage organ failure leads to placement on a transplant waiting list.
The national median waiting time for a kidney is 1,219 days, for a liver is 361 days and for a heart is 113 days. That’s on par with what we experience in Texas, although many factors can lead to tremendous variations in waiting time.
We talk about getting on the “list,” but really it’s more like a pool of names. There’s no ranking until there’s a donor, and at that point, certain circumstances allow some patients a higher likelihood of being a recipient.
A child waiting for a kidney is one of these circumstances. A kidney is the most in-demand organ, partly because its dysfunction in children is fraught with long-term complications that affect physical stature and neurological development.
Availability became such a concern a few years ago that the United Network for Organ Sharing, a nonprofit organization in charge of distributing organs, established a new allocation system for kidneys. The goal now is to have all children under the age of 10 transplanted within six months and children up to age 19 within one year. The group also revisited liver allocations and increased the area of distribution so the sickest children now have wider access to livers without geographical restriction.
According to the Organ Procurement and Transplantation Network, more than 80 children under the age of 17 are currently waiting for a kidney in Texas, and more than 50 are waiting for a liver.
Most children who undergo a liver transplant will keep the new liver for life. Kidneys are not long-term, and patients may require two or three transplants during a lifetime. Hearts grow as the child grows, but so does the risk for adult-onset conditions such as coronary artery disease.
New Methods, New Problems
When it comes to survival, we used to think not much beyond 5 to 10 years, because the medical technology just wasn’t there yet. Twenty years ago, only around 80 percent of patients survived for one year post-transplant; today, that number is 95 percent. And while just 50 to 60 percent of patients survived for 5 years, today more than 80 percent of transplant recipients survive for 5 to 10 years.
The main threats in the “old” days were rejection and infection. Today, we worry more about “mileage”—as transplant babies grow into adults, some of the diseases that required the transplant in the first place may recur.
While we take care of the children, we can’t lose sight of the parents. We remind them:
• This is lifelong. Depending on the child’s diagnosis, we may be able to cure them, but care continues for life. There will be bumps along the way—for example, medication compliance can become a problem when a toddler becomes a teenager.
• This is life changing. But once we’re beyond the acute phase, it’s important to raise these children as normally as possible. No hovering, no bubble-wrapping.
• This is a lifestyle. Parents should use every resource available to help adjust to each new phase of recovery. Life is no longer lived from one catastrophe to the next, and that can take some getting used to. Parents should also remember to take care of themselves—and their marriage. That’s medicine for the child no doctor can provide.
While it’s never easy to tell parents their child needs a transplant, it offers hope after every other option has been exhausted. And, let’s not forget, Houston is home to the best medical care in the world.
April is National Donate Life Month. To find out more or to become a donor, visit lifegift.org.
John S. Bynon, M.D., is Professor of Surgery and the Director of Immunology and Organ Transplant at The University of Texas Health Science Center at Houston (UTHealth) Medical School at Houston and is affiliated with Children’s Memorial Hermann Hospital.
By the Numbers
Nationwide: Approximately 1,800 kids 17 and under are on a transplant waiting list
Kidney – 851 (biggest need: 511 are between the ages of 11-17)
Liver – 464 (biggest need: 163 are between the ages of 1-5)
Heart – 301 (biggest need: 103 are between the ages 11-17)
* Organ Procurement and Transplantation Network (http://optn.transplant.hrsa.gov/)