Denny Schoonmaker recently addressed an audience of over 30,000 people—a pretty big accomplishment for anyone, but especially impressive for a child who has only been speaking in full sentences for twelve months.
At last Friday’s Boston Red Sox game, Denny told a packed Fenway crowd that it was time to “play ball,” a fantastic way to thank the city that has been his and his family’s second home for the better part of the past year.
A young boy with an old man’s walk
At 2 years old, Denny started hunching his shoulders when he toddled across his home in North Carolina, which his mother Mandy affectionately dubbed his “old man walk” the first time she saw it. But as the hunch became more pronounced—and became accompanied by a hardened belly—Mandy worried it could be the sign of a more serious problem, so she took Denny to the hospital.
Tests were ordered and revealed that Denny had hepatoblastoma, a form of liver cancer usually found in young children. Doctors explained to Mandy and Doug, Denny’s father, that treatment for hepatoblastoma usually involves a combination of chemotherapy to stabilize or reduce the cancer cells in the body and surgery to takeout the diseased areas of the liver (a technique know as a liver resection.) In situations where the cancer is particularly aggressive, a liver transplant may be the patient’s only chance at recovery.
Within three chemotherapy sessions, it was clear that Denny’s cancer was aggressive enough that a liver transplant was likely to be his best option. At just 2 years old, the young boy was prepped for what would be the first of many surgeries in his young life. …
Every year, dozens of infants and small children in need of a liver transplant die waiting for a donor organ to become available. But it’s not usually a lack of donor organs (grafts) that prevents doctors from saving these children—it’s a lack of organs small enough to fit in their bodies.
“Infants and young children waiting for a new liver are at the greatest risk of dying on the organ waiting list, mainly due to a shortage of appropriately sized organs for them,” says Heung Bae Kim, MD, director of Boston Children’s Hospital’s Pediatric Transplant Center. “It’s a troubling statistic, but there are things that can be done to change that.”
The change Kim is referring to would alter current donor organ allocation policies to make more livers available for a special surgical technique called split liver transplantation. Split liver transplantation occurs when a donated adult liver is carefully segmented into two unequally sized portions—the larger segment is given to an adult patient and the smaller portion to a child—saving two people from a single organ. …
Every year dozens of infants and young children in need of a liver transplant die on the organ donation wait list because a donor organ small enough for their body didn’t become available in time. But there is hope—a surgical technique that lets surgeons split donor livers into two unequally sized segments, a small one for infants and a larger one for older patients. If the process were adopted more widely it could save many of these children, just as it saved Reagan.
An uncertain beginning
When Reagan Devlin was born in 2004, her parents Teresa and Bryan were overjoyed. But that joy quickly turned to concern when nurses noticed her dark complexion and irregular heartbeat. The family was transferred to a nearby pediatric hospital in their home state of Florida, where the skin around Reagan’s lower abdomen started to turn greenish in color, leading doctors to believe she had a rare liver disorder called patent ductus venosus. Because the condition is seen so rarely only a few medical centers have any experience in treating it, but doctors from Boston Children’s Hospital’s Vascular Anomalies Center are considered world experts in these types of diseases. Within 48 hours, the Devlins were boarding a flight to Boston.
But just a few hours after meeting their new care team at Boston Children’s, the Devlins received yet another shock: the disease Reagan had traveled hundreds of miles to receive care for wasn’t to blame for her failing health. After closely reviewing her case and speaking with colleagues, Maureen Jonas, MD, director of Boston Children’s Center for Childhood Liver Disease, determined that Reagan actually suffered from neonatal hemochromatosis—a liver condition even more rare than her original diagnosis. Unfortunately, this only increased the urgency of her case. The family was quickly introduced to Heung Bae Kim, MD, director of Boston Children’s Pediatric Transplant Center, to discuss next steps.
“After talking with Dr. Jonas and looking over her charts, Dr. Kim said he didn’t think Reagan would live more than 48 hours without a liver transplant,” Teresa remembers. “Everything was happening so fast it was hard to process, like a bad dream.” …
After she was stricken with a serious illness almost overnight, and then rushed to Boston Children’s Hospital where in a matter of hours she received multiple treatments—including an extremely rare liver transplant—Hannah Swift could be the most aptly named eleven-year-old in the world.
In an age where close monitoring, drugs and advanced therapies can prevent or delay transplant surgeries for weeks or months, Hannah’s story is an amazing example of medical collaboration where every minute counted in saving her life.
More than a stomach bug
Hannah had been coughing and vomiting for a few days when her mother Carolyn brought her to see a pediatrician. Given the season, both mom and doctor assumed Hannah had caught the flu, so she was sent home for a few days bed rest. After two days of sleep and chicken noodle soup, Hannah wasn’t feeling any better. A day later she was so weak that she needed help getting into the shower. After noticing a yellowish tint around Hannah’s eyes and skin, Carolyn called the doctor who said they needed to go to the local hospital right away. …