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By Beverly Ford
| September 30, 2019
Leonce, not yet two years old, was facing a death sentence in Kenya. He was suffering from a rare brain disorder that doctors there said would surely kill him.
“It was very devastating news to the whole family,” the boy’s father, Humphrey Njogu, says of his son’s 2016 diagnosis. “From that moment, we refused to give up hope.”
Njogu and Leonce’s mother, Jane Nduta, scoured the internet for information on their son’s condition, known as vein of Galen malformation, a blood vessel abnormality in the brain that increases a child’s risk of hypertension, congestive heart failure, and brain damage.
It wasn’t long before they found the answers they were looking for—along with a team they now refer to as “miracle workers”—more than 7,000 miles and a 22-hour flight away, in Boston.
Like many of the 2,700 international patients from more than 110 countries, including the United States, who pass through the doors of Boston Children’s Hospital every year, Leonce’s family was taking a chance when they flew to Boston in 2016.
But their leap of faith was validated shortly after arriving. Where doctors in their native Kenya had given them a grim prognosis, at Boston Children’s, doctors offered hope. They had handled similar cases, they said, and knew that an operation to repair the blood flow in Leonce’s brain could save his life.
The surgery, performed during a second trip to Boston in April of 2017, was a success. Today, Leonce is a normal, happy five-year-old, thanks largely to a team of dedicated medical professionals and parents who refused to give up.
Trusting the numbers
Cases like Leonce’s have boosted the profile of Boston Children’s Hospital, showcasing the institution’s position as a global leader in both research and medicine. In fact, the hospital is the largest pediatric research enterprise in the world and was recently ranked as the best children’s hospital in the country by U.S. News & World Report for the sixth year in a row.
Dr. Gerald Marx, a pediatric cardiologist at Boston Children’s and a professor at Harvard University’s School of Medicine, says the large number of patient procedures performed at the hospital means doctors are often familiar with rare diseases that may not be seen by physicians in other areas of the world. Combine those procedures and treatments with the expertise of the hospital’s medical team and “you come up with a better outcome,” he says.
The outcomes are so good, in fact, that 650,000 patients visit the hospital and trust its doctors with more than 27,000 surgical procedures annually.
A beacon of hope
Often, by the time parents turn to a hospital across the globe for help, they’re desperate to find someone who can save their child’s life—or at least someone who’s willing to try.
In 2007, Oana Geambasu was one such mother.
Fearing the worst but determined to try everything, Geambasu made the journey from her native Romania to Boston looking for a cure for her infant daughter, Sonia, who was suffering from a number of congenital heart defects.
“We just took this chance because we had no other chances left,” Geambasu says, recalling how doctors in Romania told her that her daughter had just 12 months to live.
Doctors in Germany were more optimistic but said Sonia’s heart would need a stent implanted annually, as she grew. That’s when Geambasu turned to Boston Children’s and Dr. Pedro del Nido, a heart surgeon she had heard was “the best of the best.”
A brief email exchange in 2007 between mother and doctor resulted in a 4,500-mile journey to Boston Children’s, where a meeting with Marx and del Nido concluded that Sonia was, indeed, a candidate for heart surgery.
In 2008, back in Romania, the then 18-month-old’s condition worsened, prompting Geambasu to rush her daughter back to Boston Children’s for a long and complex, but ultimately successful, heart operation, considered experimental at the time.
Today, Sonia, now 12, is a happy pre-teen who loves gymnastics, ballet, and playing with school friends, her mom says.
All those years spent dealing with the medical community has also changed Geambasu, who found her own calling in health care as a result of her daughter’s illness. Today she is advisor to the Romanian Health Ministry, where she works to bring better healthcare to Romania’s children.
Boston Children’s cutting-edge therapies and treatments give new hope to young patients and families who have been told that a normal life is improbable, or even impossible, for them.
“There are so many rare diseases that affect children all over the world, and at [Boston] Children’s Hospital we have researchers who are studying these diseases,” says Dr. Sung-Yun Pai, a pediatric hematologist-oncologist, researcher, and specialist in bone marrow and gene therapy at Boston Children’s.
The abundance of experimental clinical trials at the hospital give options to parents who thought they had none.
One of those parents is Duy Le, an eye, nose, and throat doctor from Vietnam whose infant son, Harry, was suffering from Wiskott-Aldrich syndrome, a potentially life-threatening inherited immune system deficiency that left the toddler susceptible to infections and bleeding. Desperate to find a cure, Le contacted Pai in 2016 and asked if he could enlist his only child in her clinical research.
Using stem cells from Harry’s own blood, Pai and her medical team used a laboratory-engineered virus to correct the gene mutation that was at the root of his illness and inserted the stem cells back into the little boy’s body.
Today, Harry is growing, thriving, and playing like a normal toddler, Pai says.
Global and local
International patients aren’t the only ones who come to Boston Children’s for specialized help. Parents from across the United States also reach out to the hospital when there’s nowhere else to turn.
Kelly White, from Dover, Mass., did just that when her 17-month-old daughter, Elliana, was diagnosed with a rare blood disorder in February 2018. It took a round of immunotherapy, a bone marrow transplant, about 50 pints of blood, and more than 25 hospital admissions over about a year before Elliana was finally allowed to return home to her parents and her three siblings.
Today, Elliana, now age three, still loves going back to Boston Children’s to visit her medical friends—and to say hello to one of her favorite people, Lucilo Puello, an Environmental Services worker at the hospital. He played hide-and-seek in the hallway with Elliana every day during her stay, hiding behind anything he could find only to pop out and surprise the youngster, making her laugh and smile each time.
“The hospital is nothing short of amazing,” White says of Boston Children’s. “There’s not one person there who doesn’t care about the kids.” Whether it’s a nurse or a doctor or some other worker, she says, “everybody wants to see smiles on these kids’ faces.”
And White is not the only parent who feels this way. Geambastu says Boston Children’s offers “the best care on the planet.” Le credits the hospital for saving his son’s life.
Like Leonce’s parents, though, all use the same word to describe what happened to them at Boston Children’s Hospital: They all call it “a miracle.”
The hospital’s staff just call it their job.