Facial reconstruction: Teen with rare disorder gets new lease of life

Kashish and Akhtar Ali had to wait for 17 years to see their son Yusuf sleeping peacefully with his eyes closed. This seemingly small change in the life of the Ali family came after a surgery that corrected Yusuf’s facial structure, which was irregular due to a genetic disorder known as Crouzon syndrome that affects one in 60,000 children in the world

Mumbai: Kashish and Akhtar Ali had to wait for 17 years to see their son Yusuf sleeping peacefully with his eyes closed.

Facial reconstruction: Teen with rare disorder gets new lease of life

This seemingly small change in the life of the Ali family came after a surgery that corrected Yusuf’s facial structure, which was irregular due to a genetic disorder known as Crouzon syndrome that affects one in 60,000 children in the world. The surgery was performed at city’s SRCC Children’s Hospital.

Until a few months ago, the couple had to tie blindfolds as the boy’s eyes were bulging out, not allowing eyelids to cover his eyes. Sleep apnea had made the situation worse for Yusuf.

When Yusuf was born in Aurangabad, his family was told that his chances of survival were thin as the disease that changes the shape of the skull also affects brain development. Even if he survived, they said, he would either have physical or mental disability.

The family did not lose hope and after taking advice from local doctors they brought him to Mumbai when he was merely four months old. He was under the care of paediatric plastic surgeon Dr Nitin Mokal and neurosurgeon Dr Uday Andar. They performed the first surgery to correct his facial structure when he was one-year-old.

Dr Andar said, “His eyes were bulging out further while the forehead was flattened. The corrective surgery was done to bring his forehead forward. This would help with the development of the brain and in avoiding any developmental issues.” He also had to undergo a surgery for hydrocephalus or having excessive fluid in the brain before that.

It was due to these early interventions that Yusuf was able to achieve his developmental milestones in time. “As young parents, this condition was scary for us. We were just following instructions given by the doctors. When they told us that Yusuf needed to undergo a surgery, we pooled in resources from wherever we could,” Kashish, now an assistant professor in a Hyderabad college, said.

Once Yusuf started going to school, she prepared him for cruel comments that came his way. She had heard a few of them when she would take him along to public places. “I told him that if someone says something, it is not because something is wrong with you. They just do not know about what you are going through,” she shared. Even today, he does not feel like he was ever teased about his appearance.

The second surgery that was performed in May was meant to correct the remaining facial structure as his lower jaw was protruding and his sleep apnea. “This surgery can also be done on children with Cruozon syndrome between the age of 9 and 11, once they shed their milk teeth and get their adult teeth,” Dr Mokal said.

He said a wire frame was attached to his head post-surgery, which stayed in place till September. “We had to break his facial bones at a few places and completely reassemble the structure which was held together by what is called a RED (Rigid External Distractor) frame. The frame was brought forward by 1 mm every day to complete the process and for the new bones to be remoulded in the right manner,” he said.

The teenager is excited about being able to play tennis and football with his father, games that could earlier be too dangerous for him. A class 11 student, Yusuf wants to become a teacher just like his mother. He also writes short stories.