World Organ Donation Day falls on 13 August, and here in India this day is an important reminder of the organ donor gap that leaves many patients in want. This day is celebrated to raise awareness about the cause and help people pledge their organs for donation.)
6-year-old Mohit went to a school next to his farm in Pilwar Gaon in the Alwal district of Rajasthan. His farm had a huge threshing wheel to thresh the wheat produced. In 2015, on a winter morning in February, Mohit was standing on a stool next to the wheel wearing a jacket.
As fate would have it, the zip of his jacket got stuck onto the wheel and he was pulled in.
He was immediately rushed to the Mahatma Gandhi National Institute of Medical Sciences, Jaipur where he was declared brain dead.
His father had no idea what had happened when he was approached by Ms Bhavna Jagwani from MOHAN Foundation Jaipur Citizens Forum to talk about donating Mohit’s organs.
Ms Bhavna recounts that it took the father only 15 minutes to decide that he wanted Mohit to live on after his death and save the lives of other children.
But sadly, this doesn’t happen every time.
While organ donation has become one of the most important ways of treating serious heart, kidney, liver diseases in children, there is a serious dearth of organs available for children.
To understand the reason behind this shortage, we must first know what is brain death and how do doctors test for brain death in children?
Brain Death in Children
By definition, the determination of brain death (BD) for newborns, infants and children is a ‘clinical diagnosis based on the absence of neurologic function with a known irreversible cause of coma’.
As per The Transplantation of Organs Act 2011, it is mandatory for doctors to conduct two thorough brain death examinations before declaring a patient brain dead. While the first examination confirms the absence of neurological functions, the second one confirms that the condition is unchanged and irreversible.
In India, while the procedure is fairly straight forward for adults, it is not the same for children.
What Is the Law for Pediatric Brain Death?
To raise awareness on organ donation & transplantation in children, Fortis Organ Retrieval & Transplant organised a summit.
Speaking to FIT at the occasion, Dr Avnish Seth, Director, Fortis Organ Retrieval and Transplant said:
There is a lot of ambiguity in the law in India regarding brain death in children, which is why many doctors shy away from declaring a child brain dead. This way, a lot of organs, that could have otherwise been donated and saved other children’s lives, remain untouched.Dr Avnish Seth
Usually, organs donated by children can be transplanted in both children and adults, while the opposite might not be possible.
And even after declaring a child brain dead, the doctors face a tough time trying to counsel the families for organ donation.
Counselling the Families
While it is important to encourage and educate families of the deceased or brain dead children to donate their child’s organs, it is much more important to understand the mental condition of such families, especially the parents.
Ms Sujatha Suriyamoorthi of MOHAN Foundation has counselled numerous families whose children were declared brain dead.
The death of a child is the ultimate grief for parents. As medical practitioners, we often forget to empathise with the families. It is very important to understand that they weren’t prepared for their child’s death and are in a state of shock.Sujatha Suriyamoorthi, MOHAN Foundation
Once the initial shock is absorbed, only then should the matter of organ donation be discussed.
Challenges in India
The biggest challenge seems to be the apparent lack of data in case of children. There are no records maintained for pediatric donations.
There is also this huge debate on the condition and the medical factors under which a patient can be declared brain dead. Patient’s families are still getting acquainted with this condition, leading to a reluctance in donating their children’s organs.
Speaking to FIT, Dr Mohan R Mysore, Director, Pediatric Critical Care, Children’s Speciality Physicians, Omaha, said:
In India, people need to be made more aware of the concept of brain death. This knowledge will provide clarity, help them to accept their child’s condition, and give them some closure. Only then can we talk about next steps.Dr Mohan R. Mysore
When families do agree to an organ donation, the ambiguity in the law makes it difficult for medical practitioners to follow a specific protocol in storing the organs. This leads to deterioration of organ quality, thus rendering the organ unsuitable for transplant.
Lessons from Abroad?
Many experts believe that India should adopt a model similar to Spain, if we seriously want to bridge the current gap in organ donations. In Spain, a citizen automatically becomes an organ donor unless s/he officially ‘Opts Out’ of donation.
This system has made Spain the world leader in organ donations.
Speaking to FIT, Dr Marti Manyalich, President, Donation and Transplantation Institute, Barcelona, Spain said:
There is no child on the waiting list for organs in Spain. It is mainly because pediatric recipients are given national priority, and any child on waiting list gets a transplant within 6 months max.Dr Marti Manyalich
Next Steps for India?
Data gathering for pediatric organ donors and recipients is the need of the hour. It is also important to develop pediatric organ recipient registries so that the organs donated by children are properly utilised.
There is a need to expand the organ donor pools in India. Policy makers and medical bodies need to come together to make sure that suitable steps are taken to provide more clarity to the Pediatric Intensive Care Units (PICUs).Dr Avnish Seth
With proper awareness about the process and necessity of organ donation at large and sufficient data on the requirement of pediatric organ donors and recipients, it is possible to begin to bridge the gap for organ donation for children in India.
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But sadly, this doesn’t happen every time.
While organ donation has become one of the most important ways of treating serious heart, kidney, liver diseases in children, there is a serious dearth of organs available for children.
To understand the reason behind this shortage, we must first know what is brain death and how do doctors test for brain death in children?
Brain Death in Children
By definition, the determination of brain death (BD) for newborns, infants and children is a ‘clinical diagnosis based on the absence of neurologic function with a known irreversible cause of coma’.
As per The Transplantation of Organs Act 2011, it is mandatory for doctors to conduct two thorough brain death examinations before declaring a patient brain dead. While the first examination confirms the absence of neurological functions, the second one confirms that the condition is unchanged and irreversible.
In India, while the procedure is fairly straight forward for adults, it is not the same for children.
What is the law for pediatric brain death?
To raise awareness on organ donation & transplantation in children, Fortis Organ Retrieval & Transplant organised a summit.
Speaking to The Quint at the occasion, Dr Avnish Seth, Director, Fortis Organ Retrieval and Transplant said:
There is a lot of ambiguity in the law in India regarding brain death in children, which is why many doctors shy away from declaring a child brain dead. This way, a lot of organs, that could have otherwise been donated and saved other children’s lives, remain untouched.Dr Avnish Seth
Usually, organs donated by children can be transplanted in both children and adults, while the opposite might not be possible.
And even after declaring a child brain dead, the doctors face a tough time trying to counsel the families for organ donation.
Counselling the Families
While it is important to encourage and educate families of the deceased or brain dead children to donate their child’s organs, it is much more important to understand the mental condition of such families, especially the parents.
Ms Sujatha Suriyamoorthi of MOHAN Foundation has counselled numerous families whose children were declared brain dead.
The death of a child is the ultimate grief for parents. As medical practitioners, we often forget to empathise with the families. It is very important to understand that they weren’t prepared for their child’s death and are in a state of shock.Sujatha Suriyamoorthi, MOHAN Foundation
Once the initial shock is absorbed, only then should the matter of organ donation be discussed.
Challenges in India
The biggest challenge seems to be the apparent lack of data in case of children. There are no records maintained for pediatric donations.
There is also this huge debate on the condition and the medical factors under which a patient can be declared brain dead. Patient’s families are still getting acquainted with this condition, leading to a reluctance in donating their children’s organs.
Speaking to The Quint, Dr Mohan R Mysore, Director, Pediatric Critical Care, Children’s Speciality Physicians, Omaha, said:
In India, people need to be made more aware of the concept of brain death. This knowledge will provide clarity, help them to accept their child’s condition, and give them some closure. Only then can we talk about next steps.Dr Mohan R. Mysore
When families do agree to an organ donation, the ambiguity in the law makes it difficult for medical practitioners to follow a specific protocol in storing the organs. This leads to deterioration of organ quality, thus rendering the organ unsuitable for transplant.
Lessons from Abroad?
Many experts believe that India should adopt a model similar to Spain, if we seriously want to bridge the current gap in organ donations. In Spain, a citizen automatically becomes an organ donor unless s/he officially ‘Opts Out’ of donation.
This system has made Spain the world leader in organ donations.
Speaking to The Quint, Dr. Marti Manyalich, President, Donation and Transplantation Institute, Barcelona, Spain said:
There is no child on the waiting list for organs in Spain. It is mainly because pediatric recipients are given national priority, and any child on waiting list gets a transplant within 6 months max.Dr. Marti Manyalich
Next Steps for India?
Data gathering for pediatric organ donors and recipients is the need of the hour. It is also important to develop pediatric organ recipient registries so that the organs donated by children are properly utilised.
There is a need to expand the organ donor pools in India. Policy makers and medical bodies need to come together to make sure that suitable steps are taken to provide more clarity to the Pediatric Intensive Care Units (PICUs).Dr Avnish Seth
With proper awareness about the process and necessity of organ donation at large and sufficient data on the requirement of pediatric organ donors and recipients, it is possible to begin to bridge the gap for organ donation for children in India.
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