Kendrapara: The National Commission for Scheduled Tribes (NCST) was requested to save Jaga-Balia, the separated conjoined twins, presently staying at AIIMS, New Delhi. Till they fully recover, their parents should not be asked to vacate the premises of the premier medical institution along with the twins.
Drawing the NCST attention, petitioner Radhakanta Tripathy filed his rejoinder Tuesday challenging various pleas taken in the report by AIIMS authorities and the Union ministry of health and family welfare.
The report admits that the surgery conducted on the twins is first of its kind in India where both the children are alive. In the past, craniopagus surgeries had been done at AIIMS but they resulted in the death of both the children.
The report also states that the survival of both children joined at the head with similar condition is under 10-20 per cent at international level.
Therefore, this unique historical case of Jaga-Balia should be given utmost importance at national level as both the children are alive after surgery, Tripathy contended.
The report submitted earlier by AIIMS authorities had admitted that Balia’s condition was not good as on date. It categorically mentioned that “Balia is breathing through a tracheostomy tube and he is taking oral feeds of custards/yogurts/banana.
He is currently being mobilized by physiotherapy and rehabilitation team on wheel chair. An ENT team advised that they should keep tracheostomy tube for a few more months till he gains head control.”
Since the AIIMS authorities stated that Balia has several problems, if they are discharged, the poor parents can’t take care of the children, Tripathy said and pointed out to the possibility of the twins contracting infections while shifting from Delhi to Orissa.
There can be infection in the tracheostomy tube or wind pipe, he said adding that such critical supervision is impossible anywhere in India, except at the AIIMS.
The state government has ensured adequate funds – Rs 1 crore – to AIIMS. However, the same has not been utilised for the purpose. Rather, 80 per cent of the total amount has been refunded to the state government. On the other hand AIIMS spent certain amount for the treatment of the twins.
Condemning the idea of “Chasing the Credit of the Story” by the state and AIIMS on financial aid aspect, Tripathy requested the NCST to take up the case above politics/conflicts between the Centre and the state government as the case comes under the purview of ‘rarest of the rare’ category.
The AIIMS report has admitted that Balia currently needs good nutrition support to build up his body nutrition reserves and physiotherapy for continued recovery. It’s also questionable whether the same experts and similar treatment can be provided to him in case they are shifted. Jaga is not fully fit till date. Both Jaga and Balia also share emotional bonding on the bed.
They have acclimatized themselves to AIIMS atmosphere. Therefore, it’s highly important to keep both the brothers in AIIMS till they get fully recovered. If they are discharged from AIIMS and sent back to Orissa and something happens, blame game will take an ugly turn, Tripathy pointed out.
In the report, the authorities have accepted that “Balia will take several months for complete recovery and long term outcome is unpredictable as he is having only 50% of normal anticipated brain volume of his age as seen by his MRI, CT scans and observed at surgery. It is not scientifically feasible to predict full long term outcome for him.”
Such critical analysis and dangerous apprehension by the AIIMS itself pose a serious question about human rights of Balia and Jaga, the two poor Scheduled Tribe children from the remote area of Orissa, Tripathy stated.
Once they are sent back to Odisha where the infrastructure and ancillary facilities are lacking, there will a threat to their lives. The petitioner requested the NCST to direct/recommend the AIIMS authorities not to discharge the twins from the hospital campus till they fully recover.
He also requested the NCST to visit AIIMS and enquire about the condition of the children or send a team from the Commission to check the condition of children and their parents.
PNN
