Giving Life after Death: The Reality of Infant/Toddler Organ Donation
It is the most agonizing time for any parent, and it is something that most of us can’t even fathom and don’t want to even think about – the imminent or actual death of a child. Every day, throughout the United States, between 2 and 10 children die in hospital. Just the thought is gut wrenching for many of us — imagine someone faced with that reality. Imagine the reality of a family whose child is waiting for an organ transplant, who at any moment could also be told their child has died.
In a great number of child death cases, however, there is the opportunity to give life to another child and hope to another family.
Organ Donation Statistics for Young Children
The following statistics all pertain to the United States:
- The mortality rate for children between the ages of 1 and 5 is the highest out of all pediatric age groups waiting for kidney transplants. (Magee, et. al.)
- 40 percent of the children waiting for heart transplants are between 1 and 5 years of age (Magee, et. al.)
- The highest number of children waiting for heart transplants is in infants (younger than 24 months). (Magee, et. al.)
- As of 2008, 1,935 children were on the transplant waiting list. (McDiarmid, et. al.)
- In the last 5 years, 1,308 children have died on the transplant waiting list. (McDiarmid, et. al.)
- Up to 25 percent of infants waiting for a heart transplant will die. (Boucek, et. al.)
- “Across all the age ranges and organ types, children less than 5 years of age … have a much higher death rate compared to any other age group … Infants, those less than 1 year of age, are especially dying before transplantation.” (McDiarmid, et. al.)
- “More than 70% of the children on the list are waiting for a liver or a kidney, and the small bowel is the organ with the greatest increase in need.” (American Academy of Pediatrics)
Considerations for Infant Organ Donation
Much of the debate in the last 20 to 30 years has been over when organs can be harvested. There are three ways donation of organs can happen: donation after brain death, donation after cardiac death, and living organ donation.
Since about 1970, doctors have been harvesting organs based on someone being declared brain dead; that is, the heart is still beating, but all brain activity has stopped. Much debate centers around what actually constitutes brain death.
More recently, likely due to the mortality rate of those on the waiting list, organ procurement organizations (OPO’s) and physicians have started using a “donation after cardiac death” method or DCD. “DCD donors do not meet brain death criteria, but because of irreversible neurologic injury or terminal illness, the decision has been made to withdraw medical support. Discussions about organ donation occur only after this decision is made.” (Mazor, et. al.) You can read more about this by visiting the Journal of the American Academy of Pediatrics.
In fact, donation after cardiac death is not a new concept. Prior to the 1970′s when technology made it possible to measure brain activity, cardiac death was the only criterion for death. Debate still continues over a reasonable amount of time to wait after cardiac activity has stopped to harvest the organs for donation, while still ensuring the viability of donor organs.
Living organ donations and transplants are options for kidneys, lungs (lobe of a lung), liver (portion of), pancreas, and intestines.
Organ allocation is determined by the United Network for Organ Sharing (UNOS). What makes infant and toddler organ donation so much more challenging than that for adults is the size of the recipient and the donor. The size of the organ has to be very close, within 20 percent of the weight of the recipient. For more on organ allocation, please see the American Academy of Pediatrics.
Once a family has made the decision to donate their child’s organs, the matching begins. Matching is primarily based on blood type. If your child’s blood type is AB, he is a “universal recipient” and can receive an organ from any donor. If your child’s blood type is O, he can donate organs to anybody. He is a universal organ donor.
Doctors and organ procurement organizations (OPO’s) are not allowed to mention organ donation until a family has decided to terminate life support. This is to avoid the ethical issue of pressuring parents into making a decision to let their child die just so organs can be harvested. Also, counseling of parents regarding organ donation is done separately from the notification of death. This is done in an effort to ease the burden on the parents. It is believed that separating these discussions results in an increase of parents who consent to organ donation.
Conclusions about Infant Organ Donation
In reality, at any given time there are families reeling from the news that their child will not live. There are also those living with the reality that, at any given point in time, their precious child will die without a transplant.
If your baby dies or is suffering from any of these conditions, he may be eligible to be an organ donor and can save the lives of up to eight other babies:
2) Brain damage due to birth complications
3) Brain injury
4) Cardiac arrest or other congenital cardiac issues, so long as other organs have developed normally
Tissue donations are also an option. “More than 50 people can be saved through one tissue donor.” (Carolina Donor Services)
Darlene Oakley is a freelance writer for EmpowHER.com.
Pediatric transplantation. Magee, John, et. al. American Journal of Transplantation 2004; 4 (Suppl. 9): 54-71 Blackwell Munksgaard Web. May 25, 2012.
Preventable Death: Children on the Transplant Waiting List. McDiarmid, S.V., et. al. American Journal of Transplantation 2008;8: 2491-2495, Wiley Periodicals Inc. Web. May 25, 2012.
Trends in Pediatric Organ Donation After Cardiac Death. Mazor, Robert; Baden, Harris. Pediatrics 2007; 120;e960 DOI: 10.1542/pdes.2006-3550. Web. May 25, 2012.
Pediatric Heart Transplantation after Declaration of Cardiocirculatory Death. Boucek, Mark et. al. New England Journal of Medicine. N Engl J Med 2008; 359:709-714. Aug 14, 2008. Web. May 25, 2012.
Donating Hearts after Cardiac Death – Reversing the Irreversible. Veatch, Robert. New England Journal of Medicine. N Engl J Med 2008; 359:672-673. Aug 14, 2008. Web. May 25, 2012.
Pediatric Organ Donation and Transplantation. Committee on Hospital Care, Section on Surgery, and Section on Critical Care. American Academy of Pediatrics. Web. May 25, 2012.
Living Donation. Transplant Living. Web. May 25, 2012.
Transplant Q&A: Dr. Oz Talks from the Heart. Discovery Channel. Web. May 25, 2012.
Frequently Asked Questions about Organ and Tissue Donation. Carolina Donor Services. Web. May 25, 2012.
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