CINCINNATI -- Five-year-old Calvin Underwood is full of energy now, but doctors who examined him as a baby didn't think he'd ever be able to walk or talk.
"He was four months old, and he had been medically neglected," his mother, Brittney Underwood said.
The Underwoods started out as foster parents to Calvin but soon adopted him, knowing he had some medical challenges and would need special care. His esophagus and stomach weren't connected at birth, and he had a hole leading from his esophagus to his lungs, his mother said.
Doctors at Cincinnati Children's Hospital corrected those problems, but a pediatric geneticist suspected a larger one.
"He said, 'I've been to a conference and this person spoke about his condition for about five minutes and I really think that this is it, and I want to test him for this one gene,'" Underwood said.
Within weeks the test results showed Calvin has mandibulofacial dysostosis with microcephaly, a mutation of the EFTUD2 gene. It causes a number of complications such as head and face abnormalities, developmental delay and deafness.
Only about 108 people in the world have it. Four are in the Cincinnati area.
Underwood said her son is beating the odds with the help of the highly trained doctors at Cincinnati Children's Hospital, but they might never have been able to help without the continuing education and in-depth resources Children's is able to provide to its staff.
The Underwoods went to Washington this summer to meet with Senators Rob Portman, Sherrod Brown, and other member of congress. They want them to vote to reauthorize the Children's Hospital graduate medical education program, which expires Sept. 30. Portman and Brown were among the co-sponsors of the bill.
"We feel like they listened," Underwood said.
Hospitals like Children's use federal funding from the CHGME program to help cover training costs for general pediatricians and pediatric specialists such as the one who helped correctly diagnose Calvin Underwood. Other patients like him need specialized care to treat rare, specialized conditions, and it's not cheap to provide it.
"It's important that our state elected officials understand this and they fight for the funding," Ndidi Unaka, Cincinnati Children's hospital associate program director of the pediatric residency program, said.
Cincinnati Children's trains hundreds of residents and fellows for these very cases. The hospital received $10.3 million dollars for training in 2017. The reauthorization bill is now headed fo the full Senate for a vote. If approved, it would last for five years.
