By Meredith Engel for The New York Daily News
A 3-year-old boy has a new face — and lease on life — after surgery for a rare genetic condition that caused him pain and humiliation.
Maan Singh was born in India with Pfeiffer syndrome, which causes his skull and facial bones to stop growing properly. His brain wasn’t able to grow, his eyes bulged out of his head, and he wasn’t able to eat, sleep or even breathe efficiently. People teased him in his home country. Some even threw stones. His mother, Priya, and father, Rishi, scoured India looking for a hospital to heal their little boy. One hospital performed a surgery that was unsuccessful. Another said there was nothing that could be done.
“We were depressed because this is our first child and he was in very much pain,” Priya told the Daily News. The family was desperate. Priya knew that Maan would never get the help he needed in India. Via Facebook, they had learned of myFace, formerly the National Foundation for Facial Reconstruction, which provides free facial reconstructive surgeries to underprivileged children and adults. She emailed the organization last September. NYU pediatric plastic surgeon Dr. David A. Staffenberg was impressed with her tenacity.
“I think one of the most amazing things about this case — and this is something I’ve seen over and over in my 20 years doing this — is how incredibly persistent a mother in need can be,” Staffenberg told the Daily News. “It is just amazing. She didn’t sit back and rest. She knew something was not right and she would stop at nothing.”
MyFace and Staffenberg were happy to take on Maan’s case. He was approved on April 20 of this year. “It didn’t become a question of whether we could, or do you think we should, or could this happen,” Staffenberg said. “There weren’t any questions except, what do we need to do? How can we make this happen?”
MyFace brought Maan and his parents to New York in May for his initial six-hour surgery with Staffenberg on June 4. The surgeon and his team had to move the bones in Maan’s forehead, eye sockets, nose and upper jaw all together as one unit. It’s a very dangerous surgery to begin with — made even more complicated by the fact that Maan is just 3 years old. He’s the youngest patient Staffenberg has ever performed this operation on.
“This is about as complex as surgery gets,” Staffenberg said. The initial procedure left Maan with tiny screws in the back of his head that his mother had to turn each day to continue the bones’ movement, thus easing the pressure on Maan’s brain, eyes and airway. It made for heartwarming moments, Staffenberg said. “She was able to turn these little screws herself, so in a sense she was really fixing the problem herself,” he said.
Maan had a second operation last week that removed the screws from the back of his head. Now that he’s healing, Singh said she notices a huge difference in her child. “He’s much happier,” she told the Daily News.” He sleeps well and his snoring has stopped. Before surgery he didn’t play with other children, he was not so confident. (Now) he likes to go to public places. He plays with other kids and no one looks at him.”
It’s all thanks to myFace and Staffenberg, she said. “We were not able to do this,” Singh added. “We had no funds. We had nothing. But they gave us everything.”