How Pittsburgh is Advancing the Care for the Young
Meet four physicians making breakthroughs in medical care to improve the lives of Pittsburgh’s children and adolescents.
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dr. GEORGE MAZARIEGOS
director of the hillman center
for pediatric transplantation
There’s a glimmer of hope for the more than 500 children nationwide whose names are on the liver transplant waiting list thanks to an unconventional approach that provides a solution that is life changing — but more importantly, lifesaving.
So-called living donors are healthy adults, ideally between the ages of 18 and 50, who opt to undergo surgery to remove about a quarter of their organ that is then transplanted into a recipient. Such a small portion helps to reduce a donor’s risk of complications and allows them to heal faster.
“It’s really a fascinating organ,” says Dr. George Mazariegos. Unlike other organs, the liver can regenerate itself within a few weeks. Cooler even than that, he adds, is that the donated portion of the liver will grow to the size it’s supposed to be. “It will grow and it will know when to stop growing based on hormonal signals, we believe. But we don’t completely understand that.”
Although there is a low mortality rate for children on the liver transplant list, not all children get an organ in time and waiting can cause developmental delays in children. That wait can be exacerbated for children since the liver has to be matched in size as well. Living donors have ensured that fewer children die while on the waitlist, but ideally, Mazariegos wants that mortality rate to go down to zero.
Children’s Hospital of Pittsburgh of UPMC performs more living-donor liver transplants than any other pediatric transplant center in the country, having done more than 135 procedures since the program’s inception in 1981. The Scientific Registry of Transplant Recipients has ranked Children’s as the best out of 62 of the country’s pediatric liver transplant centers in terms of one-year overall survival for both the patient and the liver graft.
“What we really want is that every child gets the liver that they need at the right time,” says Mazariegos. “Living donation can be a lifesaving therapy for many children, so we want to extend that to as many kids as can benefit from it.”
And while most living donors are family members, increasingly the hospital will get a phone call: I’d like to donate my kidney or liver. How do I do that?
“We don’t want any child to die who needs a liver,” Mazariegos says. “All it takes is one donor to save one life.”
dr. mark sangimino
PEDIATRIC ORTHOPEDIC SURGEON,
ALLEGHENY HEALTH NETWORK
The framed pictures are some of the first things you see when you walk through the halls of Allegheny Health Network’s Pediatric Orthopedic Institute in Wexford. Drawings of colorful rainbows and smiling, yellow suns tucked among pages neatly torn out of a coloring book that contain images of penguins, leprechauns hiding behind a four leaf clover and little girls on ice skates with handwritten messages in crayon and marker scrawled across them from Payton and Kylie, Adam and Luke.
Thank you for helping the people in need and helping me. We all love you — Paige.
“Our heart is in it and I know I’m accused of having a lot of passion for it, but I feel like it came out of my training,” says pediatric orthopedic surgeon Dr. Mark Sangimino. That training began with a family who cared — mentors who cared — and is now fostered by the parents who bring their kids: infants, children and teens with debilitating orthopedic injuries and congenital orthopedic conditions. Soft tissue tumors, cerebral palsy, clubfeet, hip dysplasia, muscular dystrophy, skeletal dysplasia, spina bifida and scoliosis. “I see agapeic mothers who just do things for their children that are almost impossible. Their child requires their whole attention, their whole life, and they’re just so energetic. We feed off of their love for the child,” he says.
At the core is a fundamental desire to treat such conditions holistically with non-surgical and minimally invasive surgical options whenever possible. Options like the EOS system, 3-D imaging technology that appeals to kids with its spaceship vibe while parents can breathe easy knowing that in 3 seconds — click, click, click — the radiation dose is 40 times less than that of a traditional X-ray machine. It also allows for more accurate diagnostics and treatment planning.
When the stand-alone facility opened in 2016, it represented a 10-year labor of love driven by a tirelessly passionate team that watched, and waited, brick by brick. Beginning with the very first patient, teams of physicians, nurses, specialists and therapists would take a multidisciplinary approach to treatment that involved the whole family, not just the patient.
“It’s a lot of psychology,” Sangimino says. Families want to gain a keen understanding of what their child is going through, requiring doctors to have the time and patience to walk them through it. There are tears and frustration, but still choices. That team is there to help you figure out everything from how to work out insurance problems to the roles everyone will play during treatment. “It’s a team, multidisciplinary, holistic approach that I happen to be obsessed with because I don’t see any way as a surgeon to move forward unless I see that green light of understanding,” he says. “I can’t in my soul. It may be a personality defect, but I have to see that green light — we understand, we see, we want — because no matter what we do the parents end up with that child at home. So, I think it’s worth its weight in gold to be putting the right people in that room.”
When he sees parents go from despair to green light, that’s when he realizes that such understanding is more important than what he does surgically. Together, physician and family members shoot for one-year plans. Present options. Ask questions to gain insight into what a parent’s best hope is and what their worst fears are. “I won’t make a surgical decision until I understand those,” Sangimino says. “We make an action plan together. And then we move forward.”