ROXBURY, NJ – If all goes as planned, “Brave Little Emma” DeBarros is coming home to Roxbury tomorrow.
She’s a couple months shy of her second birthday, so she really doesn’t know anything about bravery. “Brave Little Emma” was the name chosen by Dave Valente, a friend of her parents, when he set up an online fundraiser that’s already gathered more than $11,000 on her behalf.
Someday Emma Grace DeBarros will likely realize it was her parents, Roxbury educators Joel and Jessica DeBarros, who were the truly brave ones. Their baby girl suffered from a developmental brain disorder called Aicardi syndrome and other brain problems. She endured hundreds of brain seizures daily.
Last month, after many other treatments failed, Emma’s parents allowed surgeons to enter their tiny daughter’s head and perform a hemispherectomy. "They pretty much separated the brain hemispheres so the one having the seizures is not speaking to, or not connected to, the good side,” said Joel DeBarros, a curriculum and instruction supervisor for the Roxbury school system.
The operation took place Oct. 21 at NYU Langone Medical Center in New York City. Two days later, with Emma suffering from complications, doctors needed to bring the child back to the operating room. This time they removed part of the problematic hemisphere.
“The surgery went well,” said DeBarros. “They didn’t anticipate having to go in a second time, but felt the need … She was still very lethargic after a day and a half and they felt there might be some pressure on her brain from swelling. They did some removal of the left hemisphere. It was just kind of taking up space at that point. And now there’s some room if swelling continues.”
After the surgery, Emma was moved to Children’s Specialized Hospital in New Brunswick. Her parents have been staying with her during the days and taking turns coming home to Kenvil at night.
Valente said he visited several days after the surgery and was thrilled.
“She seemed like normal self … an alert and happy kid,” he said. “My concern had been that this was major brain surgery and she was going to come out of it not even recognizing her parents. But while I was there, seeing her interact with her parents, I could tell that wasn’t the case.”
Valente said Joel and Jessica DeBarros did not ask for the fundraiser and told him they realize there are other people in worse financial straits. But Valente, who grew up with DeBarros, knew his buddy and his wife, who teaches at the Roxbury Community School, aren’t the type of people who would ask for help even if it was needed.
“If you knew Joel ...” he said. “We have a close-knit circle of friends and he’s that guy who keeps everybody together. He’s the one people kind of lean on. He’s sort of the rock of the group and he has a heart of gold.”
DeBarros expressed appreciation to all who contributed money, prayers and good wishes. “We are very thankful for all the support and prayers,” he said. “We certainly know we are very blessed in many ways and that there are other people who could use help. The support’s been overwhelming. I’m at a loss for words sometimes. I’m very blessed and humbled by everything.”
Emma will need a lot of specialized care. She has some vision problems and there are likely to be some cognitive and physical delays. "The part of the brain they removed impacts speech," said her father. "But because she is so young, the doctors really feel that the better side of her brain will pick up many functions of the side that's not working so well ... They said the plasticity of the brain at this young age is amazing."
DeBarros said Emma's come a long way in the month that's passed since the surgeries. "She's already doing things she did prior to the operations," he said. "She's remembered certain ways to play with toys and certain sounds."
DeBarros said he and his wife aren't throwing a "welcome home" party. They're looking forward to just, finally, being home together with their brave little Emma for a Thanksgiving that, this year, will have extra special meaning.