“He’s spent a lot of time on his back surrounded by things within reach: wires and monitors,” David said. “Joshua is physically a lot stronger, but virtually uncoordinated. Matthew’s always had physical restrictions, and he’s more considered in the way he grabs things, picks things up and figures them out.”
There are other differences, too. “Matthew’s great with strangers,” David said. “He doesn’t mind meeting new people, because he’s had so many people around him, fussing. Joshua’s been much more isolated. He’s been at home, so he doesn’t always take to strangers.”
The Bethesda couple are careful to give Joshua the attention he needs while also being understandably focused on Matthew’s care.
Matthew was just 2 days old when Robin Doroshow, a cardiologist who splits her time between Georgetown University Hospital and Children’s Hospital, heard something worrying while listening to his heart. He had a coarctation of the aorta, a narrowing of the large vessel that delivers oxygenated blood to the body.
When Matthew was 11 days old, cardiac surgeon Pranava Sinha corrected the coarctation and sewed up two holes in the heart that Matthew had been born with. A narrowing of a vessel below the artery was later treated by cardiologist Joshua Kanter. Michael Boyajian performed two surgeries for Matthew’s cleft lip.
“All of these kind of make for a medically fragile child who happens to be a great little kid,” said Karen Fratantoni, medical director of the complex care program at Children’s Hospital. “He’s hilarious, actually, very active but with multiple medical needs.”
Fratantoni sees a pretty diverse group of patients. “The biggest commonality is some sort of need for technology,” she said. There are kids who rely on a tube to be fed or have a tracheotomy to allow them to breathe, both of which are the case with Matthew.
“More and more kids with complicated medical issues are being discharged and more care is shifting to outpatient involvement,” Fratantoni said.
Fratantoni stresses this isn’t as dire as it may sound. Such kids “really thrive and do well,” she said. “Matthew has a twin to keep up with — or the twin has to keep up with him. He has phenomenal parents. He really has a good mix of things going on for him.”
Matthew’s most recent surgery was an important milestone. His Children’s Hospital cardiologists could see that the earlier open-heart operations had bought Matthew some time but that something more drastic was required. His heart was not improving.
The Ross-Konno procedure involves taking the working valve from the right side of the heart, replacing it with a donor valve (from an animal, for example), moving the good valve to the left side, and rebuilding the organ.
“It’s quite a complicated procedure, as you can imagine,” said David, who, like his wife, is an accountant.
Because it involves cannibalizing healthy tissue, once the decision is made to go forward with the Ross-Konno procedure, there’s no turning back.
With input from the doctors at Children’s Hospital, the Hiltons decided to have the operation done in November at the Children’s Hospital of Philadelphia by Thomas Spray, chief of the division of cardiothoracic surgery.
The operation was a success. Matthew was home for Thanksgiving and experienced a drama-free Christmas. More surgeries await — the bovine valve in Matthew’s heart will have to be replaced as he grows — but for now the family has settled into a nice routine.
“Longer term, we want to make sure both Joshua and Matthew are pushed as much as they can be to be as successful as they can be,” David said. “We keep telling Matthew no one is going care that you’ve got a heart condition when you’re applying to Harvard. You have to make your own way in the world regardless of your health problems.”
“Children’s is more than a hospital and a collection of doctors,” David said. It’s where his family has spent holidays, where he and his wife have come to know the parking lot attendants, the cleaning staff, the kitchen staff.
And it’s the place Washington Post readers support through our annual fundraising campaign. The money we raise is used to help pay the hospital bills of poor children.
To make a tax-deductible gift, visit childrensnational.org/washingtonpost or send a check (payable to “Children’s National”) to Washington Post Giving Campaign, c/o Children’s Hospital Foundation, 801 Roeder Rd., Suite 650, Silver Spring, MD 20910. Our deadline is Jan. 10.
Your gift today can make a difference in the life of a child.
For previous columns, visit washingtonpost.com/johnkelly.