ST. ANTHONY — Two-year-old Gabriella “Gabby” Smith attended an Easter Egg Hunt Saturday at the St. Anthony baseball field on Saturday. She did so like many children her age, but Gabby had the advantage of a motorized wheelchair to help her quickly find all those colorful eggs.
Young Gabby experiences Spina bifida and relies on her wheelchair to help move about. Gabby controls the wheelchair and goes any direction she pleases.
Gabby and her mother, Jennifer Smith, perused the baseball fields on Saturday in search of candy and toy-filled Easter Eggs with about 50 other children from throughout the Upper Valley during the Fremont Search and Rescue’s annual Special Needs Easter Egg Hunt. The hunt was created to give those children with various challenges the opportunity to find Easter Eggs in a lot calmer, kinder and slower paced environment.
“We knew there would be more acceptance here. She has a chance to get some eggs. One of Gabby’s therapists told us about it, and we thought we’d come check it out,” Jennifer Smith said.
Gabby is a normal two-year-old and, and true to her name, she talks up a storm.
“Did you get a new one?” she asks a photographer who changed camera lenses during the Easter Egg Hunt.
Gabby’s disability doesn’t stop her from much of anything, Jennifer Smith said.
“It doesn’t keep her down. She doesn’t know she’s any different. She honestly has no idea. Life is great,” she said.
According to the Mayo Clinic, Spina bifida occurs when the spine and spinal cord fail to form properly. It’s considered a “neural tube defect”. The neural tube serves as the embryonic structure that develops into the baby’s brain and spinal cord. Later tissues enclose both.
“Normally, the neural tube forms early in pregnancy, and it closes by the 28th day after conception. In babies with Spina bifida, a portion of the neural tube fails to develop or (to) close properly, causing defects in the spinal cord and in the bones of the spine,” said the clinic on its webpage.
The condition can range from mild to severe. In some cases, surgery can help ease the situation, but it doesn’t completely cure a person from the condition.
Gabby’s condition in utero proved impossible to operate on, Jennifer Smith said.
“It was too large of a deficit. She had so many other things going on,” she recalled.
At 15 weeks along, doctors also learned that Gabby had just one leg. The foot on her remaining leg is numb and may make things difficult should Gabby eventually learn to stand and walk. She’s also missing her "hemi-pelvis" meaning she’s missing half of her pelvis. Such would make it harder for her to use a prosthetic, but it could eventually be possible, Jennifer Smith said.
“Advances in technology come every year. She can move her leg. We just don’t yet know how that will look. Most likely she’ll be in a wheelchair, and that’s OK,” she said.
Gabby also relies on just one kidney and suffers from Cloacal Exstrophy or Omphalocele-exstrophy-imperforate anus-spinal defects (OEIS). Gabby is also fed via a tube as she has difficulty eating.
“She has some oral aversion with swallowing. She can swallow water and milk and liquidy things, but not in a great enough amounts to sustain her without a tube,” Jennifer Smith said.
Gabby also suffers from an Omphalocele hernia.
“It’s in the tummy and isn’t fixed yet,” she said.
Despite Gabby’s numerous physical problems, Jennifer Smith says that she and her husband, Jarrek Smith, take it all in stride. Devout members of the Church of Jesus Christ of Latter-day Saints, the couple says they rely on their faith to get them through.
“We gave it to the Lord,” Jennifer Smith said.
Besides, it’s not difficult loving Gabby as she has such a sunny personality and is such an adorable little girl, Jennifer Smith said.
“She’s so cute. She’s darling,” she said. “She’s a very loved baby.”
The Smiths learned Gabby had Spina bifida when Jennifer was almost three months into her pregnancy.
“Our first thought was that we were sad. We didn’t know if the pregnancy would go to term, if she would live, or if she’d have mental defects. But we knew we wanted her,” Jennifer Smith said.
Doctors suggested terminating the pregnancy, she recalled.
“We were given a terrible prognosis that she wouldn’t live beyond a few days or at all, and that we should abort. We gave her the opportunity to show us what she was meant to do,” Jennifer Smith said.
Following Gabby’s birth, the family spent three and a half months at the Primary Children’s Hospital in Salt Lake City.
“We took a lot of trips to Salt Lake,” she recalled.
Gabby currently sees five medical specialists. She and her parents recently returned from Denver where Gabby underwent surgery at the Children’s Hospital Colorado.
In the meantime, the family is preparing for Gabby to attend pre-school at Burton Elementary School.
“They have a program for the special needs at Burton. They have a fully wheelchair accessible playground,” Jennifer Smith said.
School shouldn’t be a problem as Gabby is fine mentally. She also has full control of her upper body. There’s not much that she won’t be able to do, her mom said.
“Her mind is very sharp. She does what she wants. My father-in-law is a CPA, and he's determined she’ll be an accountant,” she said.
The family also has hopes that Gabby will become a musician.
“We’re thinking violin. For the piano, we just don’t know about the foot pedal. With Spina Bifida, it can be very frustrating with the piano pedal, but Gabby loves to play her grandparents’ piano and plunk around,” she said.
Gabby’s condition does prove a challenge at times, Jennifer Smith said.
“The most heartbreaking thing is having to take her to the doctors to get blood work done or for her to get poked or prodded. It upsets her or scares her, but she’s very resilient. She’s doing quite well,” she said.
Jennifer Smith urges parents in a similar situation to learn everything they can about their child’s challenges.
“Get into the infant toddler program. There are a lot of resources to help you navigate this complex world. Find other parents who are also in the same boat. I’ve learned a lot from other families who have been there, done that,” she said.
Jennifer Smith feels blessed to live in the Gem State that has such a supportive special needs program for children. Many who would normally be disqualified from help are receiving it here. The resources are provided regardless of income levels, she said.
“Not every state has that. We’re so very blessed that we live in a state that has that available,” she said.
Jennifer Smith says that Gabby is also greatly supported by fantastic neighbors and family who live nearby.
“We’ve got my parents and my husband’s parents who are all here in Rexburg,” she said.
Jennifer Smith says that she’s grateful to have been blessed with a very even demeanor.
“I don’t suffer in the form of mental anguish. We’ve been blessed in that way,” she said.
Jennifer Smith first came into contact with the disabled while serving a Church mission in Cambodia from 2010 to 2011. There she saw first hand how those suffering from various physical handicaps lived fulfilling lives. Many had been injured from the numerous landmines left over from various wars in the country.
“They had really cool street bikes that they used that were hand powered. They were basically wheelchair bikes. These ladies were strong and got pretty much where they wanted to go,” she said. “I just think back to that and think ‘Someday Gabby could do something like that.’”
The family has a hand-powered bicycle a family in Utah gave them that Gabby will get to use later this year.
“We’ll just progress from there and give her all the opportunities we can. Gabby can be as normal as she can and experience what other kids are doing.”
For more information on Idaho’s programs for children with disabilities, visit https://healthandwelfare.idaho.gov/medical/developmentaldisabilities/childrensdevelopmentaldisabilityservices/tabid/1017/default.aspx.