Having undergone 13 surgeries to correct multiple birth defects, this charismatic 8-year-old is an inspiration to all who know him.
Ben being held by his mother Kim Mayforth in the hospital.
Watching 8-year-old Benjamin Mayforth shoot hoops with his sister Bailey in front of their home at the edge of a leafy cul-de-sac, it is hard to imagine all of the medical intervention he has had to endure to have the kind of innocent fun most children take for granted. With 13 surgeries behind him, Ben has suffered more physical setbacks in his young life than most adults nearing retirement age.
Born with various defects, Ben has never known a life unencumbered by trips to the doctor and hospital stays. Hours after he was born at the Harford Memorial Hospital in Havre de Grace, Maryland, he was rushed to Baltimore to the University of Maryland Hospital for Children's (UMCH) neonatal intensive care unit (NICU). There, doctors discovered his congenital defects, which include missing ribs, an underdeveloped lung, clubfeet, and a malformed spine -- the result of spina bifida.
Ben remained in the NICU for the first six weeks of his life, where he was treated for a life-threatening gastrointestinal infection. Although he survived his early visit to the NICU, his future was anything but certain
"It really didn't look good for Ben in the beginning," said his mother, Kim Mayforth. "Learning that your child has birth defects is devastating. Everyone thinks that his or her child can be anything in the world, but early on Ben's prognosis was bleak. His doctors initially didn't think he'd make it. They definitely didn't think he'd ever be able to walk on his own."
But with the help of his doctors at UMCH, Ben is able to walk without any assistance. In fact, his motor skills are so good that he is able to play on the Churchville Devil Rays, a Harford County little league baseball team. He also enjoys playing spontaneous rounds of basketball with his 5-year-old sister.
"People need to realize that there are success stories out there," said Ben's father, Greg Mayforth. "Ben is a walking success story, a hero. And those who have contributed to his care are heroes too. Cases like Ben's -- his progress and development -- are what doctors and nurses go to school for. It is why they become doctors and nurses in the first place. There is no way he would have the quality of life he has today without the quality of care he has received. It takes a community with channeled resources, legislative foresight and highly educated and trained professionals to battle birth defects."
Ben showing early signs of his love of baseball.
According to Roger Voigt, M.D., a pediatric surgeon at the University of Maryland Medical Center, Ben was born with a rare disorder called VATER syndrome. VATER is the acronym used to describe the kinds of physical problems associated with the disease.
"V" stands for vertebral problems. "A" for anal abnormalities. "T" stands for problems with the trachea. "E" stands for problems with the esophagus. "R" stands for renal or kidney problems, which would account for the fact that Ben was born with only one kidney.
Not all children with VATER syndrome are born with all of these abnormalities. Ben, however, had enough of the VATER defects for Voigt to recognize the syndrome.
"Ben was born with a very rare chest deformity that you sometimes see in VATER patients, where a section of ribs is missing, leaving the liver exposed," said Voigt. "At first, we considered going in there and putting in some kind of an apparatus, but then it strengthened up on its own over time."
Although Voigt and other surgeons have already performed numerous, successful operations on Ben, Ben's trials aren't over yet. Ben will still have to undergo several orthopedic procedures to improve his clubfeet. Despite these setbacks, Voigt said Ben's future looks bright.
"Because of the problems Ben has with his ribs, he won't be able to play contact sports, or sports that require a high level of coordination," Voigt said. "Endurance sports such as cross country skiing are probably out too. Other than that, however, he'll have few limitations. He could be an actor or the CEO of a company. His intellectual capabilities are good. There is truly a lot he can do. He is quite independent and already does a lot on his own. … Ben is really a neat kid, and I expect great things from him."
Ben, after one of his many surgeries, sitting on his family's deck with casts on both of his legs.
Spina bifida is the most common neural tube birth defect. The neural tube is an embryonic structure that develops along the spinal cord and into the brain. In the case of spina bifida, or cleft spine, there is an incomplete closure in the spinal column.
Ben was born with an extremely rare form of spina bifida called diastematomyelia, said Arthur DiPatri, MD, one of Ben's surgeons and the former chief of pediatric neurosurgery at the University of Maryland Medical Center. Diastematomyelia is a developmental anomaly that causes the spinal cord to literally split in two.
"This division inhibits spinal cord motion, and can lead to gastrointestinal problems [as it did in Ben's case] because it occurs at the bottom of the spine," said DiPatri, who is also a former assistant professor of neurosurgery and pediatrics at the University of Maryland School of Medicine. "The spine and all of these internal organs develop in the fetus around the same time."
Cases of diastematomyelia are very uncommon. According to the March of Dimes, spina bifida affects about one out of every 2,000 babies, while diastematomyelia affects only about one out of every 10,000 babies.
Diastematomyelia is as difficult to prevent as it is rare. Although little is known about what causes neural tube defects in general, research shows that folic acid can help prevent many forms of spina bifida. In the case of diastematomyelia, however, DiPatri said that folic acid doesn't seem to offer any protection.
An Ambassador of Hope
Coping with birth defects tends to be hard on families because no one really knows what causes them. Without solid information, it is easy for parents to blame themselves.
"I tell parents all of the time that is not their fault," said UMCH clinical social worker Jo Funk. "I have worked closely with the Mayforths over the years, and talk about a family turning something negative into a positive. They have really done that. They knew when Ben was born that it wasn't going to be easy. But they didn't stay stuck there. They kept moving on. "
Ben relaxing at home with his dog Sunni.
Several years ago, the Mayforths began working with the March of Dimes, whose mission is to eradicate birth defects and reduce infant mortality. They have embraced the opportunity to share their experiences with others.
"Our neighbor [who was working for the March of Dimes] would see us taking Ben in for surgery at five in the morning," said Kim Mayforth. " She said she always saw him smiling and happy, so she decided to approach us. She said she felt Ben had all of the qualities that would make him a good March of Dimes representative."
The Mayforths agreed, and Ben became the March of Dimes Youth Ambassador for Harford County. In his role, he helped to raise over $100,000. He was so successful as the Harford County representative that he was then chosen to be the March of Dimes' Youth Ambassador for the entire state of Maryland.
To shed light on the plight of children born with abnormalities, Ben stays busy traveling to Annapolis to talk to legislators, visiting schools all over Maryland and talking to businesses like the Gap, who sponsor March of Dimes events.
"Ben's work with the March of Dimes is so important because there is so much research that needs to be done to understand the nature of these defects," said Greg Mayforth. "It is very frustrating as a parent not to have answers. There was no test around when Ben was born that could have told us anything or prepared us in any way. You want to know what is going on. You want answers, and there currently just aren't many."
Ben clearly enjoys his work with the March of Dimes. When asked how he feels about his role as a Youth Ambassador, he simply smiled and said, "It makes me proud. I am happy that I can help other people."
The Mayforths look forward to the annual March of Dimes' fundraising events. Two of the largest are Walk America and Bikers for Babies. Ben is a popular presence at the Harford County Walk America, where he tools around among the walkers in a battery-powered mini Jeep. He also cuts a sporting figure at the Bikers for Babies event, where he rides with the other 30,000 bikers [in a motorcycle sidecar] along a 50-mile course.
"People really respond to Ben," said Kim Mayforth. "He does well as an ambassador because people just open up their hearts to him."