At first, newborn Gabby Mansour just seemed a little fussy. Then, one night, her mom, Michele DeLello, recalls, Gabby’s cries grew increasingly urgent. “I fed her and bathed her. I was doing everything I could to soothe her,” she says. But nothing seemed to help. “It was clear something was wrong.”
“Something is hurting this baby,” she remembers concluding.
The next day, she took Gabby to the pediatrician, who pronounced the 6-week-old perfectly healthy but perhaps a bit colicky. The doctor suggested switching formulas. When that didn’t work, the new mom and dad took Gabby to the emergency room.
Once Michele described how Gabby kept bending her right leg upward toward her belly, the triage nurse ordered X-rays. That’s when doctors discovered a fracture in Gabby’s tibia and fibula. “We know she didn’t fall. She’s not even weight-bearing,” Michele recalls telling them. “It was an absolute devastating shock. My head was spinning.”
Baffled by the situation, the new parents soon took Gabby to a pediatric orthopedist in search of answers. He diagnosed her right away. “This is probably the only case I’ll see in my career,” he told them before explaining that Gabby suffered from a rare disease called congenital pseudarthrosis of the tibia. It had caused Gabby’s leg to spontaneously break. The bigger issue: The congenital condition, which affects 1 in 190,000 babies within the first two years of life, creates proteins that prohibit proper bone healing at the site. The most common treatment for this disorder at the time, he went on to say — and later internet research and more doctors confirmed — was amputation.
“Here was this beautiful baby and this mind-blowing news,” says Michele. “You can’t even wrap your head around that there’s no set treatment for it — even today. You just don’t know what the next step is.”
For months, they searched for alternatives while Gabby was in and out of casts and leg braces. At 10 months old, she had her first surgery, where a doctor inserted a rod to stimulate healing and offer some stability. Three months later, a second surgery was required to reposition a portion of the rod that had begun poking through her heel.
“Amputation was not an option for us and that’s why we were so persistent with finding a treatment plan for our child that we were comfortable with, and the right hospital and surgeon that we were comfortable with,” says Michele.
Just when things seemed most dire, Michele’s dad called with a serendipitous story. He had just gone to see his orthopedist about an elbow issue and, in passing, mentioned his granddaughter’s diagnosis. To his surprise, his doctor responded that his son, Dr. Michael Vitale, was a pediatric orthopedic surgeon at NewYork-Presbyterian Morgan Stanley Children’s Hospital in Manhattan and had just published research on Gabby’s disease.
“I still get chills,” says Michele, as she recounts the moment her hope was renewed. The next day, Michele made an appointment with Dr. Vitale for then-18-month-old Gabby.
“We will heal her leg,” Michele says Dr. Vitale told them on their first visit. “Amputation was not even part of the conversation and I just knew right away that Gabby was in the best hands. No doubt in my mind,” she says. He discussed Gabby’s future, quality of life and method of treatment.
Within a month of being outfitted with a new, more supportive leg brace, Gabby began walking and soon running just like any 2-year-old. A year later, she began taking ballet lessons.
“She wound up going to dancing school,” says Michele. “She had to wear the brace at all times, other than sleeping, but she really didn’t have limitations,” she says.
Over the next decade, Dr. Vitale performed nine surgeries on Gabby, the first of which involved replacing the original rod with a new one to better promote healing.