Stella Dibler-DeMare: Learning to Thrive With Prostheses
April 2017 Issue
When Stella Dibler-DeMare was born, she came into the world with a mild form of cerebral palsy (CP) and Nievergelt's Mesomelic Dysplasia, a genetic form of dwarfism she inherited from her father, Frank "Scooter" DeMare, 37. Her fraternal twin sister, Ruby, who is two minutes younger, was also born with mild CP, but not with Nievergelt's Mesomelic Dysplasia, says DeMare.
The twins were born ten weeks early, on October 30, 2011. Stella weighed two pounds, her sister, three. They remained in the University of Michigan (U-M) University Hospital, Ann Arbor, for six weeks before going home to Grosse Ile, a small island on the Detroit River between Michigan and Canada.
While the twins were in the hospital, Stella underwent several major surgeries, says DeMare. During the first surgery, physicians cut her heel cords in the hope that they would lengthen. However, the surgery failed, DeMare says. That surgery was followed by bilateral talectomies, with the aim of strengthening and stabilizing her ankles. Though removing the talus bones in Stella's feet did help, it was not a complete success. "Her feet were able to get to a more normal position," Stella's father says. "It was better, but she still was not able to stand."
For the first three-and-a-half years of Stella's life, she was only able to get around by crawling. "Her feet were pointed straight down. She was just like a ballerina," DeMare says. Ruby, while also affected by CP, is able to walk with the help of orthoses, her father says.
An Operation to Change Everything
After several years of serial castings, Stella's feet could not be corrected, so DeMare decided that it would be best for her to have both feet amputated. Stella had bilateral Syme's amputations in March 2015 and spent eight weeks in casts. Her father says he made that decision because it "would provide Stella the best opportunity to live a normal, productive life." When the casts came off and Stella donned her first set of prosthetic sockets, "she stood up holding onto her mother's hands and wiggled her upper body back and forth for everyone, with a big smile on her face. That was her 'dancing'," DeMare remembers.
DeMare knows intimately what his daughter is going through. When he was five years old, he underwent surgery to have his right ankle fused and a Syme's amputation of his right foot, says Jeff Ropp, CP, who has been the only prosthetist DeMare has had for his care.
"I met Scooter about 30 years ago," Ropp says. "I started working with him about two years after he had his amputation." At the time, Ropp was just getting into the O&P profession, seeing patients while shadowing Carl Brenner, CPO, FAAOP. Today, Ropp is owner of Ropp Orthopedic Clinic, Commerce Town, Michigan, which he opened in 2005.
Like Stella, DeMare wears a Syme's prosthesis with an open posterior window, Ropp says. "It is the same type he started wearing when he was young."
Throughout the years, DeMare was active, excelling in most sports while in school, including golf, swimming, and, especially, tennis. DeMare was a tennis champion in high school and college. He went on to coach the sport at the high school level, where his team won the state title in 2005 and 2007, and he was named the 2007 Michigan tennis coach of the year.
DeMare has always pushed his prosthesis to the limit, says Ropp, who estimates making at least 20 prostheses for him during the past three decades. "Due to [DeMare's] high activity, we've had to replace feet for him constantly. He was always pushing the boundaries," Ropp says. "He'd constantly come to the office and say, 'This broke. Can you fix it?' Even the carbon fiber feet were not a match for him when he was playing tennis at such a high level, both in high school and college."
Like Father, Like Daughter
Ropp was aware of Stella's condition long before he met her, he says. "Scooter knew that she had some issues [prior to the amputations], but he wasn't sure if she would need my intervention or not." When it became evident that Ropp's expertise would be needed after all, naturally, DeMare brought Stella to Ropp for her prosthetic care. "I met Stella about a year and a half ago when she came to me after her feet were amputated," says Ropp.
Stella received her fourth set of prostheses in November 2016, and has had several follow-up appointments since then. "She has grown several inches," Ropp says. "And the sockets were not holding as well as we had wanted, so we're still in an adjustment period."
Nevertheless, Stella's ability to walk has improved significantly since receiving her latest prostheses, DeMare and Ropp say. She uses a walker to help with her mobility, and has the same can-do attitude that her father had when he was her age. "She stops at nothing," DeMare says. "She does anything and everything-she runs; she rides her bike. There's nothing she can't do."
"Let It Go"
Stella's prostheses represent letting go of limitations that kept her from being an active child, and Ropp decided that being fitted with a new set should have some element of fun. Ropp, who is also an amateur actor, came up with the idea of making Stella's November fitting something she wouldn't soon forget.
Like many children, the twins-who are in kindergarten and "well ahead of their age group intellectually," DeMare says-are enamored with the characters of Elsa and Anna from the Disney movie Frozen.
So, when it came time for Stella to be fitted with her most recent prostheses, Ropp says he asked Hayley Boggs, a friend and U-M theater major, who often dresses up as Elsa, if she could come to the appointment in costume. Stella and Ruby were thrilled to meet Elsa, their father says. "They love Frozen," he says. "As soon as they saw her, their mouths dropped open and they started screaming, 'Elsa! Elsa!'"
Ropp says Stella has been through a great deal to be able to walk. He calls DeMare's decision to go through with Stella's amputations "courageous." "It's hard for any parent to have to make that kind of decision for their child," he says. "I'm thankful that I have been able to be part of their lives."
Betta Ferrendelli is a freelance writer based in Denver.