GREENFIELD — It’s been a whirlwind of a few months.
There have been days filled with dirty onesies and even dirtier diapers. There have been countless hours spent in dozens of doctors’ offices at several different hospitals.
A first Halloween. A first Christmas. A first surgery, then a second.
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Kyle and Briana Addison know their first months of parenthood have been different than other first-time moms and dads. Their daughter, Brynlee, was born with spina bifida, a birth defect that prevented her spine from developing properly in the womb.
In the days and weeks after the diagnosis, the community wrapped its arms around the Addisons in a show of support. In an effort to make the difficult time a little easier, the couple’s friends, family and neighbors held fundraisers to help cover the costs of medical bills, sent food to the hospital to get them through long stays and sported T-shirts and pins that proclaim, “Brynlee Strong.”
The little girl had surgery almost immediately after she was born to repair the malformation on her spine; a second surgery followed a few months later to place a shunt in her skull to help drain the fluid there.
At times, it feels like the Addisons have spent more hours at hospitals with their daughter than at home with her. The tests and procedures will continue as she grows, each triggering a new bout of uncertainty: there will monthly check-ups and annual scans to make sure her spine is growing properly, and her organs are developing and working as they should; she kicks her legs well now, which is a good sign she’ll one day be able to walk, but that’s not yet guaranteed.
To help them weather these unknowns, Kyle and Briana Addison have started building a network of advocates around themselves to make the future a little easier. They’ve also been thinking up ways to pay forward the kindness the community has shown them.
They could let their daughter’s condition cloud their joy. But when they look down at their beautiful baby girl, see her smile and hear her laugh, all their worries seem to just melt away.
Brynlee was born just after noon on Aug. 30 — a 7-pound, 19-inch bundle of joy.She was perfect, the Addisons said, and they were prepared for the signs of spina bifida — a sac of fluid protruding from the small of her back that contained bits of her underdeveloped spine.
Spina bifida affects fewer than 1,500 babies in the United States each year and often impacts a child’s mobility: some with spina bifida depend on wheelchairs or walkers to get around; in the most severe cases, spina bifida can cause paralysis.
The Addisons’ doctors found fluid on their baby’s brain during the couple’s 20-week ultrasound that indicated an issue with her spine. The formal spina bifida diagnosis came a few weeks later after a series of tests confirmed the experts’ suspicions.
They knew right away Brynlee would need surgery almost immediately after she was born. The malformation doctors found on her spine during the ultrasound would need to removed to prevent infection or further delay of development.
So when Briana Addison went into labor a few weeks ahead of schedule, her doctors at St. Vincent Health Hospital — the same facility where Briana Addison works as a nurse — acted quickly.
After Brynlee was born via Caesarean section, the doctors whisked her out of the delivery room before either of her parents had gotten more than a glimpse of her face. Following a quick examination, they scheduled a surgery for the next morning.
The nurses wrapped Brynlee in a special kind of cellophane material to protect the opening in her back and returned her to her parents for a longer, more peaceful first visit. But the Addisons weren’t allowed to hold their daughter until after the surgery was over the next day, and a thin trail of stitches had been woven up her back to close the opening there.
It was those first few hours of fatherhood, the ones after Brynlee was born but before her surgery, that were the most stressful, said Kyle Addison, a Hancock County sheriff’s deputy. With his wife recovering on one floor of the hospital and his daughter preparing for surgery on another, he did his best to split the time between them.
Briana Addison remembers the eagerness she felt to be at Brynlee’s side, to stand by her cradle, look down on her daughter with wonder and whisper words of love and comfort to the little girl. At one point she asked the nurses to wheel her bed down to Brynlee’s room for a while.
Looking forward and giving back
Brynlee spent 10 days in the St. Vincent neonatal intensive care unit before being released from the hospital.Though they had a steady stream of visitors to keep them company at the hospital, the Addisons also spent some time chatting with other families whose newborns faced uncertain futures.
Those encounters inspired the couple to get involved with area advocacy organizations and find ways to help other children born with spina bifida and other disorders, Kyle Addison said. Since Brynlee’s birth, the Addisons have created a web of support around themselves that expands farther than their Hancock County home.
They joined the Spina Bifida Association of Indiana, the state chapter for a national organization that aims to prevent spina bifida and enhance the lives of those affected. They plan to participate in an awareness walk the organization hosts each year in hopes of connecting with other families and children with the disorder.
They also hope to host a fundraiser of their own each summer, similar to the one their friends and neighbors held for them in the days before Brynlee’s birth, Kyle Addison said. Hancock County raised several thousand dollars during a Brynlee Strong cookout in August to help the Addisons cover their hospital bills. Now, the couple hopes to host the same event each year and donate the profits to a research hospital or another family in need.
Surrounding themselves with people who can relate to their journey is an important step for families living with spina bifida, said Shalon Perez, a spokeswoman for the state’s Spina Bifida Association.
The most important thing for young parents like the Addisons to remember is that spina bifida does not define their child’s life, Perez said. That’s something her organization fights to remind them and others across the nation, she said.
Some 166,000 people with spina bifida live in the United States, Perez estimated. Research of the disorder and the medical advancements that study has yielded, coupled with improved attitudes toward people with disabilities, have helped make the lives of those with spina bifida a little easier in recent years, she said.
Whether they walk or use a wheelchair, whether they have developmental delays or not, people with spina bifida lead healthy and fulfilling lives, Perez said. Many seek advanced educations and have accomplished careers. They become doctors, teachers, artists, athletes and parents themselves, she said.
“Spina bifida is only one part of their lives; it does not define them,” Perez said.