Sandro was born without a right shinbone, a condition so rare that it affects only one child in a million. Now that he has a next-generation prosthesis, he’s discovering that he was born to run all along. And you have a lot to do with that.
Sandro’s parents, Geneviève and Lovens, knew before their son came into the world that he had tibial hemimelia, the rarest form of congenital lower-limb deficiency.
“The anomaly in his right leg was clear on the 20-week ultrasound,” recalls Geneviève. “We were immediately sent to Sainte-Justine for a closer look.”
Sainte-Justine’s specialists kept a watchful eye on her baby as he grew. Was his shinbone just slow to develop, or was it altogether absent? Regular X-rays were taken to monitor the situation both before and after his birth. In the end, the doctors confirmed the entire bone was missing.
Geneviève and Lovens found it difficult to come to terms with this “new normal” for their son. But they were more determined than ever to help him live his best life.
Life-changing surgery
The following months would bring the next big challenge: the amputation of the foot Sandro would never be able to use. The procedure was necessary to be able to fit the then 13-month-old Sandro with a prosthesis. But it was yet another blow for his parents.
“When we got the news, we were petrified and overcome with grief. We had no idea what to expect. But the support and compassion of the team, especially our social worker, made a real difference. We knew we were in the right place.”
It would take two operations to ensure Sandro would be able to move efficiently: the amputation itself and then a corrective procedure to straighten the front of his leg so that the prosthesis would be as functional as possible.
“Even after we did what we could to straighten his leg, the bend was still significant. Our biggest challenge was to figure out a way to centre the prosthetic foot on his deformed right fibula, remembering that Sandro didn’t have any ligaments in his knee to stabilize it.”
The leading-edge expertise and commitment to innovation that are the hallmarks of the Centre de réadaptation Marie Enfant du CHU Sainte-Justine (CRME) ultimately made it possible to develop a prosthetic leg specially tailored to his needs. It was a first device of its kind at Sainte-Justine.
By then Sandro was 18 months old. It took him four months and the constant support of a battery of physiotherapists to learn how to walk with his new leg.
Standing tall
Sandro’s three years old now. He is a ball of energy, constantly walking, running and jumping around. This past summer, he even made good use of a special swim-friendly prosthesis. Geneviève and Lovens are incredibly grateful for everything that has been done for their son and are confident about what the future holds.
“The support we’ve received has been tremendous. Not only from the teams we’ve worked with but also from everyone who donates to Sainte-Justine. They’re the reason why Sandro has received such a high level of care. And why we, as parents, have hope that he’ll grow up to be a healthy adult.”
Thank you for giving us the tools to be a leader in pediatric rehabilitation
Did you know that Centre de réadaptation Marie Enfant du CHU Sainte-Justine (CRME) is the only rehab centre in Quebec focusing solely on young patients? In any given year, some 5,000 children receive state-of-the-art care at the CRME.
Through your contributions, you support the 22 technicians and 15 mechanics specializing in orthotic and prosthetic devices along with the orthopedics, physiatry, occupational therapy and physiotherapy teams, so they can help children like Sandro grow beyond their wildest dreams.
Every day, you facilitate access to the latest technological advancements and empower our professionals to expand their knowledge so they can make orthotic and prosthetic devices more intuitive and easier to use.
Thanks to your generosity, the Technopôle de réadaptation pédiatrique du CRME can pave the way to new and unprecedented possibilities in technical aids. From prototyping and the use of smart materials to computer-aided design, new innovations are emerging all the time to help improve patients’ quality of life.
Your commitment is a promise to Sandro and other children like him. — a promise of ever-better pediatric care and a brighter future ahead.
Thank you for making all this and more possible.
