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Can children with anencephaly participate in organ or tissue donation?


Since 2012, donation possibilities for babies, specifically babies with anencephaly, have expanded and currently there are more potential for donation than ever before in the United States. Although each particular case is unique, and each potential donation has various criteria that must be met, donation is a very viable option for a baby with anencephaly if families wish to pursue this option.

There are two main types of donation possibilities: Donation for transplant and donation for research.


Donation for transplant

Although options for transplant donation are limited, they do exist. Currently, as long as specific criteria are met, a baby with anencephaly may be capable of donating heart valves, corneas (both tissue donation), and sometimes kidneys and liver cells (both organ donations).

The most common of these potential donations is heart valves. Typically, for a heart valve donation to occur, the baby would need to meet a 6 to 8 pound weight requirement, a minimum gestation age (often 36 weeks), and have a known time of death (and in some situations be born alive), and have the recovery surgery take place in a specified time frame after death has occurred.


Donation for research

Donation for research has a wide variety of potential donations. Currently, as long as there is a current research need and specific criteria are met, a baby with anencephaly may be capable of donating liver, lung, heart, kidney, pancreas, thymus (organ donations), skin samples, corneas, retinas, and some musculoskeletal tissue (tissue donation). Often, a baby who donates to research is capable of donating multiple organs and/or tissues.

In order to donate to research a baby must be a minimum gestation age (often 28 weeks), have a known time of death (and in some situations be born alive), and have a recovery surgery take place in a specific time frame after death has occurred. There is no minimum weight requirement when donating to research. Often, families are able to learn what the general topic a researcher is pursing if they wish to know.


Other information

It is important to note that with any type of donation, a recovery surgery will only take place after the baby has in fact died and the heart is no longer beating. This is important for parents to realize, so they know that donation will not cause any physical pain to their baby. Often a recovery can take place several hours after death (anywhere from 30 minutes to 18hrs after death depending on the type of donation).

Also, for tissue donation for transplant and organ/tissue donation for research, medical interventions such as intubation or life support, will not need to occur.

If a family makes the choice to participate in donation, it is also good to know that they can often request to have their baby brought back to them for more bonding time after the recovery surgery is finished. This is important to insure donation does not limit a family's ability to have time with their baby.

It is important to remember each potential donation is different, and each organ procurement organizations (OPO) have different requirements that will need to be met. There is no way to guarantee donation as an outcome, but if you are interested in the option of donation, it is best to contact your local OPO to learn specifics for your situation.

To learn more about donation options you can visit Purposeful Gift, a website dedicated to providing information about neonatal organ, eye, tissue, and whole body donation and supporting families through the donation process.

You can also contact your local organ procurement organization to learn about specific criteria and requirements in your area by visiting the AOPO (Association of Organ Procurement Organizations).

To learn more about options surrounding donation for research, or to receive a second opinion about research donation if you were told it is not available you can go to the IIAM (International Institute for the Advancement of Medicine).

If you are actively pursuing donation you might find the following documents useful:
Neonatal Donation Preliminary Information Document
Questions to Ask Your O.P.O.
Request to Contact Organ Procurement Organization
Parent Information from IIAM

If you would like to provide information to your medical provider about donation options, you can print this document and share it with them: Neonatal Donation Fact Sheet for Medical Professionals

A big "thank you" to Amalya Nathaniel's mom Bethany who wrote this article.



Flash and his gift
Video made about a family who was able to donate their son's liver tissue.

Sarah Gray: How my son's short life made a lasting difference
After Sarah Gray's unborn son Thomas was diagnosed with anencephaly, a terminal condition, she decided to turn her family's tragedy into an extraordinary gift and donate his organs to scientific research. In this tribute to life and discovery, she shares her journey to find meaning in loss and spreads a message of hope for other grieving families.



Last updated March 2, 2023