GREENFIELD — Like any parents-to-be, Kyle and Briana Addison have so many questions about their daughter, Brynlee.
They wonder what Brynlee will look like, which parent she’ll resemble more. Will she grow up to be a police officer like her daddy or a nurse like her mommy?
But there are other questions, too — serious ones that dull the eager anticipation in the weeks before their daughter arrives in September.
How long until they’ll hold her? Will the surgery go smoothly? Will she ever learn to walk?
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They are questions shared by a community of supporters — friends and family, neighbors and strangers — as the couple deals with a frightening diagnosis.
Doctors say Brynlee has spina bifida, a birth defect that affects just 1,500 babies – or 1 in every 2,600 — born in the United States each year.
A sac of fluid holding bits of Brynlee’s underdeveloped spine protrudes through a gap in the small of her back, a condition that will likely affect her mobility from the time she is born, her parents say. She’ll need surgery immediately to help repair her spine and to have a shunt placed in her skull to help drain the fluid there.
Some children with spina bifida develop normally after surgery; others remain paralyzed or depend on wheelchairs or walkers to get around. There are no guarantees.
There’s so much they won’t know until little Brynlee arrives.
Unexpected news
Brynlee was diagnosed with myelomeningocele, a type of spina bifida, after an ultrasound 20 weeks into the pregnancy.
Moments after Kyle and Briana Addison got the first glimpse of their baby girl, a doctor came into their examination room at Hancock Regional Hospital looking worried, causing the smiles etched on the couple’s faces to vanish.
The ultrasound showed fluid around Brynlee’s brain, the doctor said. It wasn’t normal, and it wasn’t a good sign.
Its presence almost always indicates an issue with a baby’s spine, Briana Addison said. They were told to see a specialist as soon as possible.
They didn’t want to waste a second. Briana Addison called St. Vincent Health minutes after receiving the news. A voice on the other end of the line told her she was lucky — there’d been a cancellation, and a doctor could see them the very next day.
Kyle Addison, a night-shift deputy for the Hancock County Sheriff’s Department, called his lieutenant to ask for the night off. He was too sick with dread to patrol the roads that evening, he recalled; he told his bosses he needed to stay home to be with his wife, to hold her hand and tell her everything would be OK.
It was an ultrasound technician, the next morning at St. Vincent, who first said spina bifida. It was a term Briana Addison had only heard in her college nursing classes; she didn’t know anyone who had the disorder and told the doctors it didn’t run in their families. Despite all their training and experience, the doctors couldn’t tell the Addisons why their baby hadn’t developed properly.
‘Ready for her’
Planning for Brynlee’s birth — and the medical intervention to follow — began almost immediately, the couple said.
Over the last two months, they’ve been introduced to more doctors than they can count, including neurologists and neonatal specialists. They’ve been warned not to panic when their daughter is rushed away from them in the delivery room.
They’ve toured two neonatal intensive care units where Brynlee could stay for two to eight weeks after surgery. They’ve met with a social worker who can walk alongside them as they navigate the recovery process.
But they are trying their best to look past all of that. To the time when they have their baby girl home, away from all the buzzing and beeping of medical machines and into the quiet calm that is their Greenfield home.
“I’m just ready for her to be home,” Briana Addison said, flipping through pictures from ultrasounds and placing a hand gently on her stomach. “That’s what I’m most excited for.”
In the meantime, Kyle and Briana are leaning on friends and family amid what they say feels like an overwhelming outpouring of support from people who are determined to be “Brynlee Strong.”
Show of support
Hancock County sheriff’s Lt. Rob Harris was the first of Kyle Addison’s coworkers to find out about Brynlee’s diagnosis. When his phone buzzed that night three months ago, with a nervous Kyle on the other end asking for the evening off, Harris said he immediately felt a sense of compassion for the young man he’s grown to see as his brother.
Harris and his wife, Andrea, got to work planning a fundraiser to benefit Kyle, Briana and baby Brynlee, hoping to generate enough money to cover cost of the surgery and foot the bill for the nights they’ll have to stay in a hotel in Indianapolis to be closer to the hospital.
What they originally thought would be a small gathering among local law enforcement has quickly snowballed to include hundreds of county residents who are eager to donated to the Addisons’ cause.
They’ve rallied together, selling T-shirts proclaiming “Brynlee Strong” and putting on card tournaments and live and silent auctions. Every dime will help cover Brynlee’s medical bills and Kyle and Briana Addisions’ time off work, Harris said.
Nonprofit leaders have also reached out the couple, offering to connect the couple with other families in the area who might, too, be raising a youngster with spina bifida, said Amy Borgmann, a cofounder of FUSE (Families United for Support and Encouragement), a local organization dedicated to connecting the families of people with disabilities to different area resources.
Finding out you’ll be the parent to a child with special needs can be staggering, Borgmann said. Creating a network of support is key to wading through such a difficult time, she said.
“It can be very overwhelming and financially stressful; but Kyle and Briana recognize that,” Borgmann said. “I applaud them for that because having support helps.”
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Residents have planned a fundraiser to benefit parents-to-be Kyle and Briana Addison of Greenfield whose daughter, Brynlee, has been diagnosed with spina bifida, a birth defect that affects the development of a baby’s spine and requires surgery immediately after birth.
A cookout and activity night featuring bean-bag toss and euchre tournaments begins at 4 p.m. Aug. 13 at the Hancock County Fraternal Order of Police Post 140, 400 E. Davis Road, Greenfield.
Raffles, silent and live auctions and T-shirt sales are also planned. Hotdogs, hamburgers and other snacks will be served.
All profits from the event will be donated to the Addisons to help cover the hospital bills generated after baby Brynlee is born in September.
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