After years of surgery and physical therapy, identical twins, each with her own challenges, have become advocates for themselves and their hospital.
By Kaitie Marolf
Casey and Coral performing an ice skating routine.
The Swan family had been walking most of the day as they toured Washington, D.C. Nine-year-old Coral’s feet were tired, and she asked her mom for a piggyback ride. After a few more steps, Coral’s twin sister, Casey, turned around. “Seriously? If I can walk, you can walk! I haven’t fallen all day.” Their parents, Robyn and Ken, made eye contact and laughed, “You’re absolutely right.”
When the twins were born, the family didn’t know if a walk like this would ever be possible. In her 28th week of pregnancy, Robyn spontaneously ruptured and was sent to Women and Children’s Hospital of Buffalo, where the medical team prolonged her pregnancy for another week. Casey was born first at 3 pounds, half an ounce and was rushed to the neonatal intensive care unit (NICU) before her parents could see her. “I didn’t hear her cry, nothing. But I still had more work to do,” Robyn says. Sixteen minutes later, Coral was born weighing 2 pounds 12 ounces. Nurses showed her to her parents before whisking her away as well. “Each of them had a team of nurses,” Ken says. “One for Robyn and one for each baby.”
Both girls had patent ductus arteriosus (PDA), an opening between two large blood vessels leading from the heart, and patent foramen ovale (PFO), an opening between the two upper chambers of the heart. For the first seven weeks, they were on ventilators. “It’s not until you see them all hooked up that you realize how sick they really are. For the first couple of days, it was touch and go,” Robyn says. Their time in the NICU brought changes in oxygen levels, drops in blood pressure and other challenges typical of premature babies. At about 10 weeks, they came home with heart and lung monitors, special formula and various medications. The weeks preceding and following that time were filled with shared and individual trials. “Identical twins, two totally different issues,” Robyn says. “It was a lot to manage.”
At 6-days-old, Coral needed emergency surgery for what her doctors believed was a ruptured bowel resulting from the medication aimed at fixing the girls’ heart defects. They moved all of the babies, aside from Casey and one other very sick one from the NICU and performed the five hour surgery bedside. When her surgeon came out, she was smiling. “We couldn’t believe it. We’d been crying for five hours,” Robyn says. It was a ruptured appendix, rather than a ruptured bowel.
Several weeks later, when she was able to lie on her stomach again, Ken noticed a spot on her back that was continually growing. She had a tethered spinal cord; her cord had wrapped around her sacrum and prevented her tailbone from closing while in utero.
When the girls were 2 and a half, the family began a three month hospital stay for Coral’s spinal cord release surgery. The first attempt was successful but had complications post-surgery. The muscular tissue around her tethered cord was sponge-like and began leaking cerebrospinal fluid two days after the operation because the internal sutures were not able to hold the tissue closed. After a second surgery, the same thing happened six days later, in addition to the cerebrospinal fluid contracting meningitis. After the 12 days it took for the meningitis to clear, a third attempt at the surgery was a success. For 13 weeks, Coral was heavily sedated and had to do everything on her stomach. Her muscles atrophied so badly that her parents had to progressively help her transition back into sitting and standing.
Casey’s first baby photo.
At 3 weeks old, an ultrasound revealed Casey had a brain bleed. Because of her size and inability to breathe independently, there was nothing to be done about it. “It really was secondary to her establishing her ABCs (airway, breathing and circulation),” Robyn says. Several weeks after bringing the girls home, Robyn and Ken noticed Casey was not moving around nearly as much as her sister. An MRI led to a diagnosis of spastic diplegic cerebral palsy. The family immediately began a therapy plan at home with occupational and physical therapy, trying to get her upright and somewhat mobile. “It was a difficult process to get her to a point where she could put her hands out if she fell and slow the landing without breaking anything,” Robyn says. “That took years.”
When she was 3 years old, the family flew to St. Louis Children’s Hospital so Casey could receive a selective dorsal rhizotomy, an operation which released the spasticity in her lower extremities and allowed her to walk without assistance. “I remember falling a lot right after surgery,” Casey says. In the years following, her therapy plan included aquatic, equine, occupational and physical therapy as well as karate at the studio her father owns and ice skating.
Her doctors say as long as she continues with her exercise plans, Casey may not need heel cord or bone lengthening surgery later in life. “Her greatest challenge is trying to fight growing,” says Melissa Azaula, M.D., pediatric physiatrist clinical assistant professor, University at Buffalo. “Although the disease itself doesn’t progress, the body changes and you’ve got to keep up with those changes.”
A family’s resilience
While walking a long distance is only an inconvenience for many children, for Casey, the ability to do so is the result of a lifetime of fighting cerebral palsy. Their parents constantly monitor Coral for signs of neurological distress such as blurred vision and loss of balance, which could indicate her spinal cord had retethered. Casey focuses on walking straight and with flat feet, and both girls avoid contact sports.
“It’s made the two of us relentless,” Ken says. “In regards to Casey’s therapy, we have to be unwavering in making sure she attends. If I waiver in the slightest, it won’t get her the quality of life she truly deserves for working as hard as she does.” Azaula says the strain of having a child with a chronic condition puts enough stress on some parents that they skip therapies or relent on at-home exercises. “That’s not this family,” she says. “Ken and Robyn were disciplined, and that paid off.”
In addition to focusing on their own children, the Swans are engaged with Buffalo’s NICU team and Family Advisory Council. They helped examine single bed NICU rooms at other hospitals to use as models for Buffalo’s new facility, and they represented the hospital at 2016 Speak Now for Kids Family Advocacy Day (FAD). The Swans have made themselves available to any families that the hospital staff members think they could help. “In the beginning, giving ourselves permission to go home, get a good night’s sleep, eat or shower was hard,” Robyn says. “I try to tell parents it’s okay to do that. It helps to hear: ‘Just get yourself well so when they come home, you’re ready.’”
While the family was in Washington for FAD, some of the legislators were impressed at how well Casey had adapted to life with cerebral palsy. “They’re pretty impressive as far as kids go, just in general. When you layer in the different challenges they have, you would never know it,” says Allegra Jaros, MBA, president, Women and Children’s of Buffalo. “Only when they’re really tired do you see signs of anything that would even remotely hold them back.”
That is the type of perception their parents have been going for: “Just letting people see them for the incredible kids that they are,” Robyn says. Coral loves animals. Casey loves singing. Both girls earned green belts at Ken’s karate studio and enjoy Runner’s Club. Coral is a two-year record holder of the third grade 50-meter dash at their elementary school, a start toward her dream of becoming an Olympic runner.
Casey’s personal experience has made her want to become a physical therapist. “It would be cool to learn about kids’ diagnoses and help them through PT,” she says. “People should know we’re not different from anybody else; we can still do what they can do. It just may be a little harder for us.”