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Written By: Editorial Team | Published : October 29, 2012 12:39 PM IST
Two-year old Tanmay Sharma has never moved his legs since birth and can't lie on his back. He suffers from a protrusion on his back. Called spinal dysraphism or myelomeningocel, the bump filled with spinal fluid has grown to occupy nearly half the length of his spine. It's a rare condition and affects only one out of every thousand people. Surgery is the only option he has but it won't allow him to walk or move his limbs.
To help such patients, the All India Institute of Medical Sciences (AIIMS) is considering starting antenatal/prenatal (before birth) surgeries.
'Once the baby is born, we operate to remove the bulge and give some comfort to the patients. But the paralysis cannot be reversed. Antenatal surgeries have much better results. We are now considering starting this procedure here,' Dr Deepak Gupta, associate professor of neurosurgery in AIIMS, said.
Dr B S Sharma, the head of neurosurgery in AIIMS, agreed. 'Antenatal surgeries require a huge set up. We will need a collaborative set up with the department of paediatrics and gynaecology. It will require long planning, but we are working on it.' The condition usually occurs in the foetal stage, when the brain and the spinal cord are developing during the first 28 weeks of pregnancy.
'If it is detected at 20 weeks or less during pregnancy and surgeries can be done at 32 weeks or less, the outcome is excellent according to existing global evidence,' Dr Gupta said.
The procedure will involve taking the foetus out, operating on it to remove the protrusion and then putting it back in the uterus. 'Since the tissues don't develop at this stage, the intervention is timely and the outcome is better,' Dr Sharma said.
While the exact causes are unknown, evidence suggests that deficiency in folic acid during pregnancy could play a role. Dr Sharma said if both parents were related, chances of this disorder were higher.
Though it can be detected by ultrasound, two scans performed at five and eight months of pregnancy failed to identify the problem in Tanmay. As a result, postnatal surgery can remove the bulge on his back, but there is little hope that he will be able to move his legs.
Another issue is that most medical practitioners are unaware about this condition and hence miss it during ultrasound tests. 'The doctors did two ultrasound scans on me. During the second scan, I requested the gynaecologist for another test since I sensed that there was not enough movement of the foetus. I was told that everything was normal and my baby was developing perfectly,' said Tanmay's mother Asha Sharma.
AIIMS surgeons are set to raise this issue at the annual conference of Indian Society of Paediatric Neurosurgery, where surgeons from across the world will convene.
