Purposeful Gift

Finding Support in creating your Child's Legacy...

As a parent you want to give your child the world. You would do anything to help them achieve their biggest dreams and fulfill all their needs. The moment you find out you are carrying your precious son or daughter you see so much potential in their sweet little life. Then, the devastating day comes when you hear the words of your child’s life limiting diagnosis. Suddenly, all those hopes dash away and a roller coaster of helplessness ensues. What can you do now? How can you help them? How can you fix this? where do you turn?

It doesn't have to be so isolating and dark. We want to share with you a wealth of supportive organizations to assist you on keeping your child’s life and legacy alive for generations to come. Its a twist in perspective, and although it wasn't what you had initially imagined or intended, your child can still live a life full of immense potential, discovery, and worthiness that will impact the world for decades.

One way to do this is through neonatal organ and tissue donation. A once daunting and troubling experience has been made easy and accessible through organizations such as Purposeful Gift. Read on to hear more about the assistance that Purposeful Gift can provide.

When she found out early in her pregnancy that one of her identical twins would die at birth, Sarah Gray began a five-year journey that culminated last week in Philadelphia.

She had to carry the sick baby to term in order to protect his healthy twin. And she also looked into organ and tissue donation.

"Instead of thinking of our son as a victim," she said, "I started thinking of him as a contributor to research, to science."...

Vitez, Michael. "Thomas Gray Lived Six Days, but His Life Has Lasting Impact." Philly.com. N.p., n.d. Web. 30 Mar. 2015.

Sarah Gray reacts to research information about the donated retinas from her son, Thomas, who died at six days old in 2010. Callum, 5, Thomas' identical twin brother, plays during the visit to the Hospital of the University of Pennsylvania. DAVID MAIALETTI / Staff Photographer

Purposeful Gift

"Purposeful Gift highlights information about organ and tissue donation for transplant, organ and tissue donation for research, and whole body donation for research. We also answer frequently asked questions, walk with you through the donation process, provide accurate information about multiple types of donation, share donation success stories, and provide helpful resources to guide you through your pregnancy and potential donation journey.

Having lost our firstborn son to anencephaly, our hearts know the pain of loss, as well as the joy of donation. If your baby recently received a life-limiting (terminal) diagnosis in utero, our hearts hurt with you. We hope to support you as you walk the journey of grief and celebrate the life of your little one."-Bethany C., Purposeful Gift

What can babies with Acrania and Anencephaly potentially donate?

Since 2012, donation possibilities for babies, specifically babies with anencephaly, have expanded and currently there is 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 Important 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

Purposeful Gift is a 501(c)3 non-profit organization that increases awareness about neonatal organ, eye, tissue, and whole body donation. Purposeful Gift website provides accurate information, answers frequently asked questions, provides useful resources, and guides families through the donation process. Purposeful Gift can also act as a parent advocate or liaison for a family pursuing neonatal donation.

You can also contact your local organ procurement organization to learn about specific criteria and requirements in your area by going to the AOPO website.

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 website.