Times of India
09 July 2010
By Pratibha Masand
Mumbai, India

Watching his daughter take her first steps was hardly a happy moment for Rajesh Soni. Born with a spinal defect, Purva could walk only with her right leg. And till last month, the three–year–old with a rare deformity that left her without a spine had little hope of being able to walk properly.

Told there were ‘complications’ during his daughter’s birth, it was only when the Raipur resident first held his daughter in his arms that he realised what that meant. The baby had a huge lump in her lower back and there was blood and pus in the lump. Her legs were twisted and only the right one moved at all.

Rajesh took his daughter to every possible doctor. Though they could identify the defect–meningomyelocele–they couldn’t find a cure. “I learnt that it is possible to know about the defect during pregnancy itself. Even though I had taken my wife for sonography every month of her pregnancy, not once were we told that there might be a problem,” he said.

“Meningomyeocele is a birth defect in which certain parts of the spine are not developed properly. There are two types–in one the bundle of nerves is covered by skin, in the other there is no skin over the lump and nerves can actually be seen when the child is born. The latter is an emergency and treated immediately,” said Dr Vishal Peshattiwar, spine surgeon, BSES Hospital.

Even as Purva grew up, it was difficult to find treatment for her condition. “The local doctors packed the lump. But when she began to sit, she would bend at an angle. Standing and walking was a difficult affair for her,” said Rajesh.

Finally earlier this year, as Purva Soni turned three, Rajesh consulted Kokilaben Hospital in Andheri. “Only about one in 10,000 children suffer from this condition. Children suffering from it generally do not have control of urine or leg movements. In Purva’s case however, she could walk on her right leg. This made it more rare as only 2% children suffering from meningomyelocele can walk,” said Dr Mihir Bapat, spine and orthopedic surgeon at Kokilaben Hospital, in charge of Purva’s case.

“The girl had just a bunch of nerves and no bone in her back. The sack of nerves stuck to her back in a lump. Her spine was bent at a 100–degree angle. With Purva, surgery was risky as she could have lost whatever control she had on her limbs if something went wrong,” said Dr Bapat.

In the surgery done on her on June 4, the team of doctors first put screws in her hip bone and the upper part of the spine, where bones were present. “We provided a column within which her spine could grow properly. We cut the spine at the bent and joint it straight again. In place of the lump we implanted a bone taken from her leg,” he said, adding 10 days later, a surgery was done on her twisted legs to straighten them. “I now see a bright future for my daughter. She will be able to go to school,” said a happy Rajesh.

Straightened Out Meningomyelocele
Myelomeningocele is a birth defect in which the backbone and spinal canal do not close before birth. It is a type of spina bifida. The defect can be detected before birth with the help of ultrasound and and sonography and is usually a very rare condition

Purva’s Case

• She had a bunch of nerves and no bone in her back
• A sack of nerves stuck to her skin in the back
• Her spine was bent by more than 100 degrees
• Generally, such a child doesn’t have control over urine and legs. But Purva was able to walk with her right leg
• Corrective surgery for kids below 5 is a problem as they aren’t steady on their bones
• However, this case was even more complicated as the child had no bones in her back

The surgery

• Screws were put in the hip–bone and upper part of the spine
• The spine was cut where it bent in a 100 degree angle and joined again in a straight angle
• Where the protruded angle existed earlier, post–surgery there was a gap. So a bone taken from Purva’s leg was put in that area, which provided support to the spine
• The spine will grow in the column provided around it
• The doctors put a brace from chest down for the girl In another three months, the girl will start walking, but the brace will remain for a year