A short boy underwent surgery to lengthen his legs, a successful first step to improving his quality of life and allowing him to be up to 40 centimeters taller.
“The goal is for it to be functional in life, assures Maria Fiorilo, the mother of 10-year-old Jacob. We don’t do this to distort what he is, but society is not adapted. Everything is complicated.”
When he was born, Jacob caused everyone’s surprise: he was dwarfed. His four brothers and sisters, who do not have the same father, do not have the disease. Both parents had no history of dwarfism in their respective families.
From an early age, his mother wanted to find a solution to help him. While searching the internet, she discovered limb lengthening surgery. However, the Montrealer regrets that no doctor in pediatric hospitals wanted to operate on Jacob.
“They said that the child had to be 14 years old and choose himself,” explains this 40-year-old nurse.
Moreover, Mrs. Fiorilo was ready to pay dearly to help her son, and even to go to the United States.
“Whether it was $100,000 or $200,000, I didn’t care! I would have saved all the pennies. I wanted him to have a normal life.”
Eventually, the mother got in touch with Dr. Marie Gdalevitch, an orthopedic specialist who specialized in this operation.
“She was like an angel to us,” says Ms. Fiorilo.
“It hurt too much”
In addition, the surgery is reimbursed by the Régie de l’assurance maladie du Québec. In February 2021, the eight-year-old underwent his first leg lengthening operation.
In total, the surgery made it possible to lengthen his two femurs by six centimeters and his tibiae by four centimeters.
For months, the child had external fixators, which helped stretch the bones (bone distraction). Obviously, the surgery is not without pain. Jacob had to homeschool for months and couldn’t walk.
“It hurt too much,” he recalls.
In a few years, Jacob could undergo three more operations: two on the legs, and one on the arms. In all, the child will be able to gain up to 40 centimeters in the legs, and 10 centimeters in the arms.
“Lengthening the arms helps the most, because short people lack proportion. Often, they have trouble with hygiene,” says Dr. Gdalevitch.
Easier with children
The latter adds that the operation is easier in children, who react better. “Children are very resilient,” says the doctor.
Today, the boy who measures 1.21 m says he is ready to be operated on again. “I want to do it to be bigger,” he says, although he says he can do everything like his friends.
Although she is delighted with her son’s progress, Ms. Fiorilo deplores the teasing of short people.
“It’s so insulting for them, for the parents,” says the one who often cried.
Lengthening surgeries in short children
First surgery
Between 8 and 12 years old ➞ Lengthening of the legs by 10 cm
Second surgery
Between 12 and 16 years old ➞ Lengthening of the legs by 15 cm
Third surgery
Around 16 years old ➞ Lengthening of the arms by 10 cm
Fourth surgery
18 years and over ➞ Leg extension of 10 cm
Not easy to find a hospital
Even if the limb lengthening operation is reimbursed by the public plan, only two hospitals agree to operate on these patients, deplores a surgeon.
“Children’s hospitals don’t want to do them, confirms Dr. Marie Gdalevitch, orthopedic surgeon. But, it’s not aesthetics, it’s functional.
Each year, Dr. Gdalevitch operates on three or four short people who want limb lengthening. She believes she is the only specialist to perform these operations in Quebec, and also operates on patients from elsewhere in Canada.
However, even if the surgery is reimbursed by the Régie de l’assurance maladie du Québec (congenital deformity), only the University Hospital Center of Sherbrooke and the University Hospital Center of Laval (CHUL), in Quebec City, accept these patients.
“We had to pay for the hotel room for a week,” recalls Maria Fiorilo, who had her son Jacob operated on at the CHUL, even though they live in Westmount.
The child’s consent
According to Dr. Gdalevitch, children’s hospitals refuse these cases because they do not believe in the benefits of this operation and prefer that patients be of legal age to consent.
However, she assures us that she always obtains the approval of the child.
“The child must agree. There is a lot of physiotherapy. If he doesn’t participate, it won’t work, she says. Me, I’m not here to judge, it’s not my role. My role is to do that in a safe way.”
Not for all
According to the Quebec Association of Small People, this operation remains marginal in the community.
“Some people think about it, others will never want to do it, it’s unique to everyone,” says Nathalie Labelle, inclusion advisor at the Association. Not everyone is ready to go through this.”