Mallory Mueller needed another heart because her own, surgically patched twice, was giving out.
She was not yet 2 years old at the time, 2007, and her best chance of getting a transplant meant temporarily moving with her mother to await a heart in St. Louis, splitting up the family of five from Syracuse, Neb.
If Mallory needed a heart today, that wouldn't be necessary.
Children's Hospital & Medical Center in Omaha received the go-ahead last week to start a pediatric heart transplant program. The program, which will serve infants and children up to 17 years of age, won interim approval from the federal United Network for Organ Sharing.
Children's will run the first program in the state dedicated to pediatric heart transplants. The Nebraska Medical Center has done a few on teenagers, a spokesman said.
By taking on heart transplants, Children's further asserts itself as a full-service pediatric hospital. Children's last year announced that, for the first time, it would deliver babies in rare instances where heart surgery or other intervention is immediately required after birth. The hospital, which hadn't delivered babies before, has delivered one so far.
With its own transplant program, the Omaha hospital will provide continuous care, monitoring patients, choosing strategies, performing conventional heart reconstructions and going to transplantation as a backup option, Dr. James Hammel said. Further, its patients won't have to go out of state.
“This is really well within our capabilities as a team,” said Hammel, 43, who will do the bulk of the transplants.
About 370 children a year receive heart transplants in hospitals around the nation. The most active pediatric heart transplant centers in the region are in St. Louis, Denver, Minneapolis and Little Rock, Ark.
Arkansas Children's did 21 last year, the most of any hospital in the nation, according to the United Network for Organ Sharing. The University of Iowa, which did its first pediatric heart transplant in 1987, performed a total of seven such surgeries from 2008 through 2012.
Children's received word of interim approval Monday from UNOS. The agency bases its decision generally on whether a hospital has the appropriate facilities and personnel with the necessary credentials and experience.
“I just got an email from UNOS,” Dr. Rob Spicer said during a presentation last week about the transplant plan. “It says we're active.”
By “active,” Children's can now put a child on the national list for heart transplants and could place a heart into him if he was sick enough to rise to the top of the national list.
“How exciting is that?” said Barb Roessner, who led the presentation. Roessner, a physician assistant, will be Children's transplant coordinator.
About 50 hospitals nationwide performed heart transplants on children last year. Many of those did five or fewer, according to UNOS, the nonprofit organization that manages the nation's organ transplant system under contract with the federal government.
Hammel, who helped the Nebraska Medical Center restart its heart transplant program in 2005, said it's hard on families to send a child to a transplant hospital in another state. The child has to wait there sometimes months for a heart.
“It's very disruptive,” Hammel said.
Children's refers out more than 10 patients a year for transplant evaluation. Three Children's patients are on the waiting list now in St. Louis, Spicer said.
Mallory Mueller had undergone two surgeries at Children's shortly after birth in June 2005. But a valve in her heart began leaking, and she became sicker and weaker. A cardiologist said it was as though Mallory's toes were hanging over the edge of a cliff. Physicians referred her to St. Louis Children's Hospital for transplant evaluation.
A cold can be devastating, so Mallory makes liberal use of Germ-X hand sanitizer. At Halloween in 2009, she went costumed as a Germ-X fairy.
Her declining condition led to her placement on the pediatric heart transplant list, and in early March 2007, transplant staffers called the Muellers at their farm near Syracuse to say a heart had become available. Mallory and her parents, Scott and Wendy, flew out of Lincoln on a special plane to St. Louis, where Mallory was prepped and anesthetized.
But physicians determined that the donor heart was bruised and not fit for transplanting, Wendy Mueller recalled. The mother and daughter remained in St. Louis, where Mallory received medication intravenously. The two stayed at a St. Louis Ronald McDonald House for patients receiving medical care and their families.
Scott Mueller and their two other children, Logan and Madison, stayed on the farm. Dad would drive with the two kids to St. Louis early Saturday mornings to spend weekends with Mallory and Wendy. The five cooked meals together, watched children's movies, went to a playground and blew bubbles, which Mallory loved.
On Sundays, the five would weep before Scott and the two older kids drove back to Nebraska. Wendy can still see Logan's and Madison's little hands waving out the car window.
Logan and Madison, 6 and 4 respectively at the time, each visited for a week in St. Louis. The mother wanted them to know how important they were, too. Wendy Mueller recalled the time when, with all the drama surrounding Mallory's birth, bad heart and surgery, Madison took scissors and chopped off her own ponytail to assert her existence.
Wendy recalled phoning from St. Louis to wish her husband a happy birthday. He didn't sound happy, she said, with Mallory's life in jeopardy and the family in two states.
No, Wendy said, it really is a very happy birthday. Her husband immediately knew what she meant. A heart had just become available for Mallory.
The transplant went well. The Muellers have a picture of one of the surgeons holding Mallory's original heart. The heart was huge, practically covering the surgeon's palm. That defective heart really worked to do its job.
All the Muellers were back in Syracuse about a month later.
Children generally rise to the top of the UNOS list by their degree of sickness and the length of time they've been on the list.
Infants typically wait about three months for a heart, according to UNOS, and kids age 1 through 5 on average wait about six months. There are only about 30 babies on the waiting list for a heart compared with about 1,560 patients 50 to 64 years of age.
Hammel trained in pediatric heart transplantation at the Hospital for Sick Children in Toronto. Other surgeons on the team are Drs. Ibrahim Abdullah, Kim Duncan, John Um and Michael Moulton, all of whom also do some surgeries at the Nebraska Medical Center.
Children's spokeswoman Cherie Lytle estimated startup costs for the program, including two new staff members, equipment and supplies, at more than $1.3 million. Annual operating costs will total about $1.1 million, she said. Permanent federal approval for the Children's program is expected in June.
Mallory Mueller has occasional follow-up appointments at Children's. The Muellers have grown especially close to Dr. Carl Gumbiner and nurse Cindy Foster. Wendy Mueller said she got goose bumps when she learned last week that Children's had won interim approval to do heart transplants.
Wendy Mueller of Syracuse, Neb., with daughter Mallory, who in 2007 had to go to St. Louis when she needed a heart transplant at 22 months old.
It's so hard to leave your comfort zone, adjust to a new set of doctors and split up the family for a transplant, Wendy Mueller said. Transplanted hearts generally last about 15 years, and Mallory could still be a teenager when she needs another. It's not a thought that the parents like to contemplate, but they acknowledge the possibility.
“Now if she does, we just have to go 45 miles north and we'll be there,” Wendy Mueller said.
St. Louis Children's did excellent work. Mallory had a healthy heart and she began to grow rapidly. Her hair, always thin and short, burst with thick growth. She is 7 now and in second grade at Syracuse Elementary School. She likes to sing and dance and doles out hugs so generously that her parents told her to tone it down a bit.
Mallory asked her mother why she has to take three pills twice a day. Her mom said it keeps her heart healthy. The pills suppress her immune system so it doesn't attack the heart as a foreign object. A cold keeps her down longer than normal, and Mallory uses Germ-X hand sanitizer so liberally that one Halloween she dressed as a “Germ-X fairy.”
Mallory goes on sleepovers with friends and wrestles with her brother. She plays softball and is on a swim team.
She recently used the term “I can't” in reference to some homework. Her mother reminded Mallory that “I can't” isn't in the Mueller vocabulary.
“She's really had to work hard and to fight to get to where she is now,” Wendy Mueller said. “I just want her to know that she can do anything.”
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