23rd January 2000

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Giving new shape to a little face

Baby Natasha was born with an underdeveloped face. But thanks to the New York University Medical Center, corrective surgery was done. And the proud parents are determined to see her through to normalcy. Wathsala Mendis reports

See, Putha, that nangi's face?"

Sherine de Silva had the tough task of protecting her little daughter from many a curious query like this since the day she was born. The young de Silvas were heartbroken the day their baby girl Natasha arrived. It was painfully obvious that something was not quite right. One side of the baby's Imageface was smaller and underdeveloped while she had a nasal and two auricular skin tags (extra flaps).

Natasha couldn't eat solid food as she had difficulty in chewing. She would choke. At first whatever they fed her, came out through her right nostril. It was scary.

She was put on blended food and liquids. She was taken to hospital so many times that she used to cry at the sight of the building.

It was psychologically and socially traumatic for both the child and her family. It was not easy having people stare at her and point at her as if she were from another planet. It could be worse once she started school when all the kids would, no doubt, pick on her!

That would be any parent's worst nightmare. Sherine and Christopher wondered "how?" and "why?" But more importantly, they needed to know what could be done to help their daughter. They had to do something and do it fast.

The spirit was willing but the facilities were not available. They were on their own. It was sheer fluke when one day Sherine spotted a news item on TV about the New York University Medical Center where surgery is performed on those who have craniofacial disorders. The young couple wasted no time in making arrangements to take their daughter to the States. It was a risk but they decided to take the chance anyway. Fortunately, Sherine had a cousin right there in New York. Natasha was first referred to Dr. Clifford Mevs at Sisters of Charity Medical Center in Staten Island, New York. This proved to be a godsend. It was Dr. Mevs who told them all about NYU's Institute of Reconstructive Plastic Surgery which, incidentally, maintains the nation's largest clinical, academic and research center in the field.

She was two-and-a-half years old then and was diagnosed as having a craniofacial condition known as "hemifacial microsomia" and also "sleep apnea." The former is a condition in which one side of the face is smaller than the other, including the jaw, ear, and facial bony structure. The asymmetry of the face may become more pronounced as the child gets older.

Natasha also had sleep apnea where there were episodes of cessation of breathing lasting 10 seconds or longer during sleep. This sleeping disorder occurs when the relaxation of the muscles at the base of the throat causes obstruction of the airway.

The breathing could even stop when complete blockage of the airway occurs. Natasha's breathing was laboured and she was snoring loudly. For three months before surgery Sherine used to keep Natasha on her lap morning, noon, and night, fearing her breathing would suddenly stop.

At NYU the tonsils and adenoids of her ear, nose, and throat were removed under general anesthesia. So were her ear tags. The craniofacial team performed a six-hour surgery to reconstruct her jaw using a bone expansion technique known as "distraction osteogenesis". Her lower jaw was surgically cut and a distraction device was applied to separate the bone.

This special device consisted of two pins (which protruded from the surface of the skin and were placed on either side of the bone cut), connected by an adjustable expansion rod. The parents had to turn the screw twice a day till the desired expansion was achieved.

Sherine was overwhelmed by the care and warmth showered on her daughter by the hospital staff. They constantly monitored Natasha's condition, keeping the parents informed of every step of the procedure, both during and after surgery. It was an extremely tough time for the de Silvas. But they knew they had to be strong for their child. Natasha has made steady progress since then. She enjoys her meals, plays around with her little cousins though still a little scared of strangers and cameras. But she needs more follow-up procedures to expand the soft tissues of her face, to further improve facial symmetry.

"We've gone through a lot, moved heaven and earth to see Natasha having a normal childhood. It would have been impossible if it were not for the wonderful team of doctors at the NYU Medical Center. They put in their best. I couldn't have asked for more," beams the grateful mother.

Little Natasha will have to be taken to the States shortly as she needs further surgery to give fullness to the lower jaw even though the facial skeleton has been reconstructed.

She's gone through an awful lot for a three-year-old. It has not been a walk in the park. But she's come so far. And the proud parents are determined to see her through.

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