“I would do it all over again – in a heartbeat”
Renee Cloutier-Voss was only a few days old when her mother noticed a dimple on her right leg. That was the first hint of what turned out to be a crippling birth defect – and a series of difficult choices.
“When Renee was born, we didn’t know she was born with any leg length discrepancy”, says her mother, Erica Voss. “She had been home from the hospital for about 3 days. I was dressing her and I saw a little dimple on her leg.”
“I was born with fibular hemimelia, which means I was missing my fibula bone. My right leg was about 3 inches shorter,” adds Renee.
Fibular hemimelia is a birth defect that can be treated in several ways, depending on the patient, and the severity of the condition. Renee’s parents spent the first year of her life travelling to different surgeons, seeking treatment options.
“They were faced with the decision to amputate,” says Renee, “or go through the lengthening process with surgeries, possible infections – which I had – and the possibility I may never be able to walk like everyone else.”
Erica recalls that the surgeons they consulted were not unanimous on what to do about her daughter’s fibular hemimelia.
“It was about 50-50” says Erica. “Half said to amputate; it would be easier for her because there aren’t a lot of options, and her leg will always be deformed. But then the others would say ‘but she has such a nice foot, and in time, there may be something you can do.’ We elected to keep her foot, and keep her leg, and just do lengthening.”
Renee underwent multiple surgeries and met with many doctors in attempts to lengthen and grow a fibular bone. “I’ve met lots of doctors and when you meet that right surgeon, you’ll know – you have a connection with them.” Dr. Shawn Standard, Head of Pediatric Orthopedics at the International Center for Limb Lengthening in Baltimore, turned out to be the right surgeon for Renee.
“The vast majority of the patients I see can be reconstructed,” says Dr. Standard. “Previously it was greater than 90% amputations. Now it’s greater than 90% reconstructions.”
Although they were expecting a procedure using external fixators, Erica and Renee were excited to get a call from Dr. Standard about a new device. Erica recalls, “He called and told us about this new procedure that he thought would work for Renee. It’s an internal rod that goes down the middle of your bone. No external fixators, no drag, no pin site infections to clean.”
Dr. Standard says, “When you have had an external device, then you subsequently have an internal device, those are interesting patients to talk to. They say by far, hands down, the internal device is amazingly different and less painful.”
Erica says, “I asked Dr. Standard, ‘If this was your daughter, is this the procedure you would do for her?’ And he said. “Yes.”
Renee has this to say about her limb lengthening journey: “Surgery is hard and recovery is hard, but I think that with the right mindset, and the right willpower, and attitude – attitude is a good foundation. I think that you can make it through anything.”
Dr. Standard was impressed: “She had fantastic family support, very dedicated . . . really knew what she was getting into, and was ready for the physical therapy and everything that it brought.”
Still, he says, there’s hard work involved: “It’s still limb lengthening, it still requires a lot of dedication, time, commitment, travel. It’s an endeavor that really takes a lot of commitment.”
Renee remembers: “I was stuck on crutches for about a year, not being able to walk or play with my brothers. So now every day that I can get up, and I can walk, I put it to the fullest, and I make the best of every single day. People ask me all the time if I watch sports. I look at them – no, I don’t watch sports, I play them! Why would you watch if you could play, right?”
Today, Renee looks ahead, with plenty of that attitude that got her this far: “For me, every day that I can get out of bed and that I can take a step, is a good day. I feel as if you can do whatever you want; you’re not limited. And that’s something that’s really important to me is not being limited in anything. I’m really grateful to my parents for everything that they’ve done. Can’t thank them enough for choosing to keep my leg. I would do it all over again in a heartbeat.”