Ranger’s Story – Be The Star

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Ranger: One little boy, born twice

His parents smile when they say their sweet, spirited three-year-old little boy, Ranger was born twice.

Arizona natives and elementary school friends, Afton and Aaron Deacon had to make decisions around parenting even before Ranger arrived on the scene. The two were busy building careers and getting ready to buy a house in anticipation of their growing family. Then news revealed at their 20-week anatomy scan stopped all their busy planning.

Gently speaking to Ranger as he zooms around their cozy living room, Afton recalls she knew something was up. “The ultrasound tech started off being so talkative, and got quiet. She kept looking from his brain to his back,” she said.

From that moment, things happened fast — within 2-hours fast. A physician broke the news that their tiny boy showed all the characteristics of Spina Bifida, along with Hydrocephalus and Chiari II malformation. These conditions are related to the spinal cord, brain and cranium and can cause lifelong problems.

“I was in shock,” Afton remembers. For his part, Aaron says his personality and work at the Sheriff’s Office prepared him to stay calm, as he comforted Afton. The couple had undergone genetic testing early in the pregnancy, he added, and everything had looked fine. It was hard to believe. Afton explains that within 2 hours, the two were ushered to a high-risk OB/GYN and consulted with experts to get an understanding of what they were coping with.

“My biggest fear was the unknown details of what his life would look like. So we moved right away from shock and fear to thinking about how we could help him live the best quality of life possible.”

But they had decisions to make, first.

“The bravest person I know”

Spina Bifida is a malformation of the spinal cord that affects 5 to7 of every 10,000 pregnancies, or about 1500 new babies each year. Ranger’s case was the most severe type, characterized by an opening in the spinal canal along several vertebrae in the lower or middle back. The membranes and spinal nerves push through this opening at birth, forming a sac on the baby’s back, typically exposing tissues and nerves. This leaves babies prone to life-threatening infections. Hydrocephalus, or the build-up of fluid in the brain, can cause painful pressure, rapid head growth and brain damage.

For children with this type of Spina Bifida, intervention is necessary before or after birth to mitigate developmental and physical delays. While not everyone is a candidate for fetal surgery, the Deacons had to decide whether to wait until Ranger was born to make the repair, or, travel to Colorado to undergo fetal surgery. The procedure would close the lesion and reduce Ranger’s chances of needing a shunt (or a device through which accumulation of brain fluid is alleviated) to give Ranger the best possible chances.

The fetal surgery is a risky one to both the mom and baby and must be performed within a very specific timeframe — 24-weeks for Ranger’s case, when babies are still highly vulnerable. After consulting with varied physicians, Aaron said it was Afton who cemented the decision. “She’s the bravest person I know,” he said. “It was out of our hands, and we decided to trust our team and move ahead.”

Born twice

It was one of the reasons the two were attracted to Ruth Bristol, MD, a leading neurosurgeon at Phoenix Children’s. “She supported the fetal surgery to make the repairs, and she’s been excellent to work with,” Afton says. The plan from the beginning was for Dr. Bristol to lead Ranger’s continued care after he was born. “She was a match made in heaven.”

The surgery was a “textbook” success, repairing the lesion on the spine, and nearly reversing the Chiari II malformation. At this point Ranger does not have a shunt and is living with stable hydrocephalus. “We say that he was born twice,” says Afton, who shares that his little bum  was visible, and his lesion site was exposed when they went into perform surgery in utero.

Still, Dr. Bristol explains, deficits of Spina Bifida are permanent. “Whatever leg function they have at birth is the best they will ever be. Unfortunately, as children move into the young adult years and start to gain adult weight, they tend to lose function and become wheelchair bound. The Deacons have done an absolutely amazing job at getting Ranger all the appropriate therapies and staying on top of everything. That is quite a challenge with Spina Bifida because it affects so many body systems,” she says.

It’s why his care at Phoenix Children’s Hospital is so critical – Ranger and his parents have access to the expertise he needs right in Phoenix, in a place that feels like home.

Over the moon with Phoenix Children’s

The Deacons say their lives are busy and full caring for a medically complex child — juggling scans, surgeries and a range of physical, occupational, and feeding therapies to ensure he reaches his highest potential for physical and cognitive development. They say the time they spend at Phoenix Children’s has made it so much more bearable. “The environment, the lights, the colors — Ranger isn’t scared at all to go,” they say. “Everyone has been so kind and helpful. We’re just over the moon with the care we’ve received.”

While all parents look forward to their baby’s first steps, Ranger’s were especially joyful. The twister cables on his small legs help his feet to stay aligned, in addition to Ankle Foot Orthoses (AFOs) providing leg and ankle support. And they say his face lit up when, at 18 months old, when he took those cautious steps with the use of his tiny medical walker. “He loved the freedom, and we took him everywhere to give him the opportunity to practice. “He was so proud,” Aaron said.

These days, Ranger can be found loving his mornings at preschool. Like all kids, his parents say, he has good days and bad. Change can be hard, and he will always require lifelong care and monitoring.

“It’s true he changed everything,” says Afton. “I’ve become his best advocate and am very involved in his care and organized with his appointments and fighting for what he needs.”

“For me I don’t know any other way to be a dad,” says Aaron. “We grew up real fast.”

Afton looks at her sweet boy, practicing his cooking skills in his miniature kitchen. “He has a sweet spirit and loves to make people smile. He’s the one who made us who we are today.”