Infant Organ Donation: Much needs to be done!!

Dr. Smriti Sharma Bhatia,
Assistant Professor, Miranda House, University of Delhi

There have not been many infant organ donations in India so far. This issue came to the forefront recently when tragedy struck a doctor couple. Dr. Umesh Sawarkar, and his wife Dr. Ashwini Sawarkar, along with their three-month-old daughter Meera met with an accident. Both parents survived with injuries but unfortunately the CT scan of baby Meera revealed brain hemorrhage. When after 48 hours another MRI scan revealed extensive brain injury, both parents knew there was not much hope and decided to do keep their daughter alive by donating her organs.

Fate had other plans though. The shock and grief of losing their only child was exacerbated by the fact that they had to face ambiguous and unclear laws regarding organ donation for an infant while initiating this process. They were discouraged by the hospital saying the rules on infant organ donation were not clear. Still they persisted. On contacting NOTTO they were told that the donation was possible, but they did not have any expert to certify brain death for a child this small. This led them to ask the Health Ministry which approved the request within 12 hours. With insistence, the Nagpur-based Central India’s Children Hospital and Research Institute (CICHRI) began the process of certifying brain death. Meera’s first apnea test came out positive. Another test was supposed to be carried out within 24 hours to finish the process of brain death certification. A national search was initiated to help find Meera’s pediatric match. Within six hours, there were requests for two recipients. A three-year-old child, wait-listed with Max Super Specialty Hospital, Saket, in New Delhi, for kidney was found compatible and another child who had been wait-listed with Medanta hospital, Gurgaon, was found compatible for liver transplant. All the arrangements were made but precious time was already lost. Meera’s body was under a lot of stress as it was her fourth day on the ventilator. She suffered cardiac arrest and couldn’t make it. And with that the hopes of her parents to keep her alive in the body of others and the expectation of the parents of the would be recipients were ruined. The story of Umesh brings out a huge grey area in the field of organ donation that needs to be addressed. Neither are authorities aware of the process nor are guidelines in place for infant organ donation.

Some pertinent issues that arise are: There was no authority to give brain death certification for an infant. Even doctors and the National Organ and Tissue Transplantation Organization (NOTTO) had no clear-cut idea whether the donation of a 3-month-old baby was possible or not. According to Dr. Sawarkar, the failure to donate her organs has caused them as much trauma as losing their only child. He has given some suggestions as to make the process of infant organ donation as smooth as possible.

  • Make major brain injuries notifiable to zonal organ donation committees so that special team members can come and counsel the relatives regarding organ donation as they are not in a state to think of organ donation.
  • Make clear-cut guidelines and laws for all age groups, including infants, as there is a lot of ambiguity, and even organ donation authorities are in a dilemma.
  • Create more awareness regarding infant organ donation as infant deaths due to brain disease is quite high, and the recipient list is long.
  • The time gap between 1st and 2nd Apnea test to complete the process of brain death certification is quite long in case of infants. Make it flexible according to patient’s condition, and the opinion of doctors and relatives concerned.
  • Many economically poor patients, who are willing to donate organs, but can’t bear expenses. Please make some arrangement for such patient who is willing to donate organs but can’t bear expenses to make patient survive till organ donation.

Though the parents could not donate her organs, but the death of little Meera did not go waste. It has led to the exposure of lacunas in the process of infant organ donation and authorities are aware of it now and certainly these issues will be addressed and more lives would be saved. We at Dadhichi Deh Daan Samiti pray that her soul rests in peace. A big salute to the parents for showing such courage in the face of abject grief!!