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Many families who receive a prenatal diagnosis of a life-limiting condition seek to find meaning in the loss they face.
They want to give their experience a sense of purpose and create a lasting legacy that honors their baby’s presence in a personally profound way. For some, that legacy may include neonatal organ and tissue donation for research.
Even as you make incredibly difficult decisions right now to protect the time you have with the precious child you’re carrying to term, you may be thinking about how to keep his or her memory alive in the future. One important option that often gets overlooked during the many challenging conversations between care providers and bereaved families is donating non-transplantable organs and tissues to medical research, education, or diagnostics. But just knowing this path exists may give you a much-needed measure of comfort and a sense of control during a time of emotional chaos. By understanding what neonatal donation is, how the process works, and the support systems in place, you can make a fully informed choice.
Neonatal donation for research may be possible when a baby dies of natural causes soon after birth. While transplantation of certain organs and tissue to another person is sometimes an option, it isn’t always. Instead, these tremendous gifts can be donated to researchers working to advance medical understanding, including preventative approaches to disease and life-saving treatments. This type of donation can empower families to reframe the grief of a life gone far too soon within a legacy of innovation that will impact the well-being of people across the world in ways never before possible.
Where the Neonatal Donation for Research Process Begins
It’s important to know that there’s an ethical process in place that allows you to steer your unique journey to neonatal donation, consider available options, and make decisions. The starting point is typically your local organ procurement organization (OPO).
There are 58 OPOs across the United States. When a person of any age is nearing death or has passed away, federal regulations require hospitals to notify its local OPO. With the right permissions in place, the OPO is responsible for coordinating the recovery of organs for transplant or medical research. If your family is considering organ and tissue donation for transplant or research, reach out to your OPO and let them know. Purposeful Gift, a nonprofit that works to increase awareness about neonatal donation for transplant and research, offers a detailed list of questions to ask your OPO that can make it easier to start the conversation.
If you choose to donate, the OPO will ask you to fill out a consent and authorization form, as well as a questionnaire on your medical and social history. You’ll also need to do bloodwork that screens for infectious diseases and determines your blood type and Rh factor, which is a protein in your red blood cells. Next, the OPO will contact a neonatal donor program to discuss available options for research-focused donations. Together, the OPO, the donor program, your multidisciplinary care team, and the research team that may receive the gift of one or more of your child’s organ and tissues will create a transparent and compassionate donation plan.
The donation plan should be an integral part of your birth plan, which allows you to outline your wishes for you and your baby throughout the birth and in the moments that follow. Some of the choices that you make in those moments could affect your ability to move forward with the donation you have planned. However, your donor care team will help you understand the critical timelines that make donation possible.
FAQS on Neonatal Donation for Research
With the help of the International Institute for the Advancement of Medicine (IIAM), a nonprofit research organization that works with researchers and medical organizations in the U.S. and abroad, we strive to answer some frequently asked questions about neonatal donation research below. The IIAM’s Neonatal Donor Program focuses on providing non-transplantable, neonatal organs for medical research and education, and is an incredible example of the importance and benefit of a collaborative approach to caring for bereaved families.
If neonatal donation for research is an option you feel comfortable exploring, these questions can guide a more detailed discussion with your family, OPO, and care providers, at a pace that’s comfortable for you. Remember, from initial contact with the OPO to what happens post-donation, you deserve to understand the donation process in its entirety and feel heard every step of the way. Never hesitate to ask questions or express concerns to anyone involved in your care, your baby’s care, or the donation coordination team.
Q. Will I be able to spend time with and hold my baby after the birth?
A. Yes, your donation coordination team and care team will work very closely with you to follow your birth plan, which includes the bonding time and experience you desire to have with your baby. Some families may choose to not move forward with donation if they want to spend more time with their child than clinical factors for donation allow. Others arrange to spend additional time with their baby again after organ and tissue is complete, to ensure that the donation process can proceed. Your baby will be returned to the funeral home you specify, unless other arrangements are made.
Q. Will there be expenses related to the donation process that my family has to pay?
Typically, the answer is no. The recipient of donated organs, whether for transplant or research, incur donation-related costs. For example, IIAM incurs all expenses related to the donations of organs and tissue to its organization. Your care provider can give you information on costs related to your delivery or other hospital expenses.
Q. Are there cases where neonatal donation for research isn’t an option?
Because there are so many factors that can’t be determined until delivery, it’s possible that a donation may not be possible even if a family desires it. Each organ or tissue is evaluated at the time of referral. It’s also possible that unforeseen logistical factors may keep a donation from reaching the designated research facility in time. Parents should always have an alternate plan in mind that they’re comfortable with, in case the option to donate isn’t possible.
Q. Will I be able to find out how my child’s extraordinary gift(s) are advancing research?
A. In some cases, yes. IIAM, for instance, will work through a family’s OPO to pass on information provided by the researcher who is using the donation. If a donor family wants more information than what they receive, IIAM will do all they can to facilitate a conversation with the researcher and OPO to see if that’s possible.
Q. What if I decide I don’t want to donate my child’s organs or tissue for research?
A. A choice of this magnitude is extremely personal. Some bereaved families feel that making donation a part of their child’s legacy is a positive and healing experience, while others don’t. If you choose not to donate or change your mind after you made the decision to donate, it is okay. There are countless other ways to create a legacy that you may feel more drawn to as you seek to honor your baby and your parenthood.
Learn More About Neonatal Donation for Research
The power that lies in the love left behind after a loss is limitless. Parents are incredible agents for change, whether that change has impact on the world around them or if that change simply means that they learn how to live again in a world without their child. Neonatal donation for research is profound in its ability to transform a child whose life is all too short into a colossus of strength that can simultaneously guide bereaved families and medicine forward.
To learn more about the impact and benefits of neonatal donation, you can:
- Read and watch stories of donation on the IIAM website. The IIAM site also offers updates on neonatal donation for research and more information on the screening and organ and tissue recovery process.
- Contact IIAM directly at 800-946-9008, Ext. 2821, or [email protected]. A family services coordinator can answer questions and direct you to resources you may find helpful.
- Read Carrying To Term’s comprehensive FAQ on neonatal donation with IIAM and the role they play in supporting families who are considering or who have chosen neonatal organ and tissue donation.
The Importance of Neonatal Donations
Almost any type of neonatal organ or tissue may be considered for medical research, education, diagnostics, and other scientific use. Areas of research that have benefited or can benefit from neonatal donations include:
| HEART | Researchers can now identify markers that may predict future cardiac disease for at-risk people. This makes the development of preventative approaches more likely. |
| KIDNEY | Researchers discovered a link between decreasing kidney cells, called nephrons, and chronic kidney disease (CKD). By studying developing kidneys and learning how many nephrons people are born with, researchers are helping doctors identify patients at risk for CKD. |
| LIVER | Researchers need to explore immature liver cells to make progress in life-threatening liver diseases, such as hepatitis and high cholesterol. |
| LUNG | Researchers can now see how lung tissues and cells develop. This may lead to reductions in chronic lung disorders and early childhood lung disorders like respiratory distress syndrome, the leading cause of death in babies born prematurely. |
| PANCREAS | Researchers looking to prevent or cure Type 1 diabetes need to learn how the pancreas develops in its earliest stages and how it begins making insulin. |
Information adapted from the International Institute for the Advancement of Medicine, “Medical Research with Neonatal Organs and Tissue,” with permission, April 2020.