Grace in the Midst of Spina Bifida
“Science only goes so far, then comes God.” — Nicholas Sparks, The Notebook
Betsy plays with her 1-year-old daughter, Grace, who was born with Myelomeningocele spina bifida causing nerve damage and severe disabilities.
Photography by Jeff Amberg
It was a cold, rainy day when Grace was born on Dec. 22, 2014. Her birth brought brightness into the lives of her parents according to her mother, Betsy Reckord, despite the fact that her first and only child was born with a condition called spina bifida as well as several other birth defects.
Betsy, a former teacher, and Josh, her husband who is employed with the South Carolina Air National Guard, were somewhat prepared for the challenges they would face upon Grace’s arrival. At an anatomy scan during the pregnancy, they first learned about spina bifida, which essentially means the baby’s spine fails to close. There are three types — Occulta, Meningocele and Myelomeningocele — that vary in severity. It was determined during the scan that Grace would be born with the most serious form, Myelomeningocele, which causes nerve damage and severe disabilities.
“Josh and I went into our appointment that day thinking we were going to have a scan where the sonographer would seal the gender, and then we would have a reveal party the following day. Within seconds of the scan, I knew something wasn’t right as I could read the sonographer’s face and body language. My heart sank.”
The very first indication of spina bifida, the Reckords quickly learned, is that the cerebellum (the part of the brain at the back of the skull) is pulled down, which the sonographer observed when Grace’s brain was scanned.
Betsy knew a little about spina bifida from reading, but her husband knew even less. “God works in mysterious ways because our anatomy scan was four days after school started,” she says. “A little boy with spina bifida was placed in my classroom! Plus, the art teacher at my school also has a granddaughter with the same condition. I felt like it was God’s way of telling me, ‘It’s going to be okay.’”
Reportedly, there are at least 166,000 Americans living with spina bifida. Dr. Guy Castles, a pediatrician with Pediatric Associates, says that the birth defect is by no means the most common that he sees, but it is one that requires a lifelong management of symptoms. In his practice, he only has four spina bifida patients, and they are older. Spina bifida, however, is one of the conditions that is looked for among all newborns.
Stanley Skarli, MD, a pediatric neurosurgeon for 10 years, with Palmetto Health Neurosurgery Associates for the last two years and a neurosurgeon for 22 years, typically treats six to 10 new patients annually who are born with spina bifida. Another 20 or more new patients are born with associated conditions, but perhaps not the fully opened spinal cords often seen in classic spina bifida cases. Because Dr. Skarli is the only pediatric neurosurgeon in Columbia, he typically sees patients all through the Midlands and even from the coast or the mountains. He says Palmetto Health Pediatric Neurosurgery sees 100 or more spina bifida patients of varying ages.
Before the 1960s, spina bifida was most often a death sentence for patients. Parents were told to let children die as they would experience a “hopeless” existence. Advancements in new procedures and technology are resulting in 60 to 70 percent of patients not needing shunts, a small hollow tube for fluid drainage from the brain, which is a typical condition associated with spina bifida, as well as more patients being able to walk at least with the aid of leg braces.
Although some cases are severe, at least 80 percent of patients can expect normal mental capabilities, according to Dr. Skarli. Plus, in Columbia, there is much spina bifida patients and their families can look forward to: a new rehabilitation center at Palmetto Health Children’s Hospital that is expected to open in 2017, video eurodynamics technology available in early 2016, and virtual spina bifida clinic capabilities, also available early 2016, that enable patients to be shuttled from one specialist to another on the Richland hospital campus through a coordinated scheduling system. “For one day each month, the specialists (orthopedists, urologists and neurosurgeons, for example) can take care of all the spina bifida patients so that families do not have to make so many different appointments at different dates and times,” says Dr. Skarli.
Dr. Skarli says he tries to provide as many resources and as much expertise as possible for families as the reality of a spina bifida diagnosis can be daunting at first.
Betsy and Josh Reckord cite the Medical University of South Carolina, Palmetto Health Orthopedics and Grace’s physical therapist and neurosurgeon out of Charleston as providing them with knowledge and, most importantly, hope.
Besides garnering knowledge through pediatricians and other specialists, such organizations as the Spina Bifida Association of the Carolinas provide detailed information and support for families suddenly faced with the overwhelming reality of children with neurological damage and mobility impairments. Conditions associated with spina bifida also include bowel and bladder complications, latex allergy, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, depression, tendonitis and social and sexual issues. National Chapter Development and Walk Director Mary Nethercutt says that there is a wealth of resources on the national website as well as on the South Carolina spina bifida website — sbancsc.org — that are free and easy to access. Families can also find details on expected costs and connection methods to other families. SB Parents ListServ, for example, enables parents to share ideas and resources. There are various education days, as well as annual Walk-N-Roll awareness events.
Betsy says that she is looking forward to connecting in person with other parents of spina bifida children, but she currently participates in multiple groups on Facebook that offer answers to questions as well as common scenarios.
After becoming educated about spina bifida, the Reckords were equipped to step into a role as advocate for Grace. If they did not agree with a diagnosis, they asked for a second opinion. If they were not happy with her care, they sought different opportunities.
Though Grace is only a little more than a year old, the Reckords’ lives have been drastically altered. Upon birth, they learned that not only did Grace have spina bifida, but doctors immediately had to address a host of other issues: a heart defect, bilateral clubfeet, bilateral knee dislocation and DiGeorge Syndrome, also known as 22q because she is missing portions of her 22nd chromosome.
“All five of these birth defects make her very fragile,” says Betsy, “so daycare was not an option. She has at least two doctors appointments a week and has had up to six in one week.”
The couple has agonized over watching their child being wheeled into surgery and return with a breathing tube down her throat. They have been heart wrenched seeing Grace helpless, crying with no sounds emitting because of a tube.
“She has had so many surgeries, and she’s just a little over a year old,” says Betsy. “It’s hard to think about what she’s been through and to see the scars on her back, chest, stomach, thighs and ankles.”
Sadly, Betsy’s mother, their rock and cheerleader during Grace’s first several months of life, passed unexpectedly before Grace’s first birthday. Others have stepped in to assist and attempt to fill that void.
Despite the challenges, the Reckords say they have been covered with support. They cite the Medical University of South Carolina, Palmetto Health Orthopedics and Grace’s physical therapist and neurosurgeon out of Charleston as providing knowledge and hope.
“For example,” says Betsy, “while in utero, there was a concern that Grace was going to have hydrocephalus and need to be shunted after birth. Grace’s amazing doctor told us while I was pregnant that he gives babies some time to see if their bodies will absorb the extra fluid. He monitored her head ultrasounds and measured her head circumferences. He also performed MRIs. As long as those all came back normal, he held off on shunting.” (As of this publication, Grace has yet to develop hydrocephalus.)
In addition, when Grace was born, her legs were pulled up against her chest and resembled “noodles,” expresses Betsy. “No leg movement” was written on multiple charts. However, after surgery to release the tendons in her quads and physical therapy, there is expectancy that Grace may walk with a walker or braces. Their goal is to give her as many chances as possible to do as much as she can on her own.
“These sweet children are fighters,” she says. “As one of her physicians said, ‘They are constantly proving doctors wrong with what they can do.’”
The Reckords point to family, friends and complete strangers for lifting them up through this trial. Most importantly, the Reckords focus on their daughter as a blessing. Little Grace brightens and elevates their spirits. At first look, no one would guess that the vibrant toddler suffers any hardships. She enjoys playing alone and with others, being taken on walks, watching videos of herself and going on trips to the Riverbanks Zoo. “She is seriously the happiest baby. For someone with so many health complications, she loves life!” says Betsy.
The Reckords hope to maintain as much normalcy as possible. Yet, they recognize that their daughter is a miracle from God. Betsy adds: “Faith and prayer have gotten us where we are today. The amount of people who have and continue to pray for our little girl is heartwarming. Complete strangers pray for her, and we have always said, ‘God is listening.’ She has beaten so many odds and continues to prove so many wrong. She does this because God has been placing His healing hands on her. He has big plans for her!”