It is a gut-wrenching thought for most if not all parents to even think about the imminent or actual death of a child. That is the reality every day for up to 10 families.

At the same time, thousands of families fear they may become one of those 10 families if their child does not receive a new heart or kidney.

The challenge is the rarity of child deaths and the necessity for the size of the organ available to be within 20 percent of the weight of the recipient.

Of the 2 to 10 children dying in hospital each day, only a few of them are eligible donors. Out of those eligible donors, only a fraction of the families will decide to do so.

That is what makes infant/child organ donation such an important topic.

Organ Donation Statistics for Young Children

- The mortality rate for children between the ages of one and five is the highest out of all pediatric age groups waiting for kidney transplants. (Magee)

- “Children less than 5 years of age ... have a much higher death rate compared to any other age group.” (McDiarmid)

- 40 percent of the children waiting for heart transplants are between 1 and 5 years of age. The highest number of children waiting for heart transplants is in infants under 24 months. (Magee)

- As of 2008, 1935 children were on the transplant waiting list and in the last 5 years, 1308 children have died waiting. (McDiarmid)

- “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

Since about 1970, eligibility for organ transplant was based on someone being declared brain dead. That is, their hearts were still beating, but all brain activity has stopped.

Up until the 1970s when technology made it possible to measure brain activity, cardiac death was the only criterion for death. More recently, “donation after cardiac death” method or DCD became accepted.

“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) For more,
click here.

Doctors and organ procurement organizations (OPOs) 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 to ease the burden on parents. It is believed that separating these discussions results in an increase of parents who consent to organ donation.

Living organ donations and transplants are options for kidneys, pancreas, intestines, a lobe of a lung, and a portion of a liver.

Organ allocation is determined by the United Network for Organ Sharing (UNOS).
For more,
click here.

Once a family has made the decision to donate their child’s organs, the matching begins, which is based primarily on blood type.

Conclusions about Infant Organ Donation

At any given time, families are reeling from the news that their child will not live. Others are 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 an organ donor and save the lives of up to eight other babies:


1) SIDS


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)

It’s a decision we all hope we never have to make. But in the shadow of death, there can be life. A renewed life is possible for a baby or young child whose only chance of survival is an organ transplant.

Sources:

Pediatric transplantation Magee, John, et. al. American Journal of Transplantation 2004; 4 (Suppl. 9): 54-71 Blackwell Munksgaard Web. May 25, 2012.
http://www.ustransplant.org/pdf/pediatric_03.pdf

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.
http://onlinelibrary.wiley.com/doi/10.1111/j.1600-6143.2008.02443.x/pdf

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. http://pediatrics.aappublications.org/content/120/4/e960.full.pdf

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.
http://www.nejm.org/doi/full/10.1056/NEJMoa0800660#t=article

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.
http://www.nejm.org/doi/full/10.1056/NEJMp0805451

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.
http://pediatrics.aappublications.org/content/125/4/822.full

Living Donation. Transplant Living. Web. May 25, 2012.
http://www.transplantliving.org/living-donation/

Transplant Q&A: Dr. Oz Talks from the Heart. Discovery Channel. Web. May 25, 2012.
http://health.discovery.com/convergence/transplant/articles/qanda.html

Frequently Asked Questions about Organ and Tissue Donation. Carolina Donor Services. Web. May 25, 2012.
http://www.carolinadonorservices.org/faq.php#top

Reviewed August 21, 2012
by Michele Blacksberg RN
Edited by Jody Smith