The experience of receiving a prenatal diagnosis of a life-limiting condition leaves families with many questions and complicated emotions to navigate. A key part of feeling fully-informed and equipped following a diagnosis, throughout pregnancy continuation, and in the bereavement period that follows loss, is having access to the insight and support provided by a multidisciplinary care team of specialists and experts in their field. Each member of a family’s care team serves a unique purpose, and Carrying To Term is here to help shed light on the role of each professional.
Carrying To Term was fortunate enough to have the chance to talk with the International Institute for the Advancement of Medicine (IIAM) about their Neonatal Donor Program and the role they play in supporting families who are considering or have chosen neonatal organ and tissue donation as a part of their child’s legacy. IIAM’s Neonatal Donor Program is an incredible example of the importance and benefit of a collaborative approach to caring for bereaved families. IIAM has shared their insights into neonatal donation for research, the impact this gift has on medicine and medical research, and the power this choice holds for families. It is our hope that this conversation sheds light on neonatal donation for research, the options available to parents, and the support that exists to walk these families through every step of the process.
Many families are familiar with organ and tissue donation in the context of transplants. IIAM exclusively works with non-transplantable organs and tissues for the purpose of medical research, education, diagnostics and other scientific use. What are the benefits and impact of neonatal organ/tissue donation for research? How does this option serve and support families who receive a prenatal diagnosis of a life-limiting condition and are seeking a legacy for their child?
The benefit and impact of neonatal organ/tissue donation are many. For the medical aspect, organs and tissues from the early developmental stages allow researchers to understand cell assignment and cell regeneration–two important concepts that will enable researchers to ultimately promote regenerative properties within all human tissue, and thus, enabling the body to heal itself. Consider a baby born prematurely where the lungs do not fully develop. Researchers want to know how they can encourage the lungs to continue to grow, so seeing lung cells so early in development lends insight. This ‘magic’ will also allow individuals who have chronic lung disorders later in life, such as Chronic Obstructive Pulmonary Disorder (COPD), to receive medical treatment that will encourage new, healthy lung cells to replace damaged cells.
For the emotional/family driven aspect, organ/tissue donation allows a family to leave a lasting legacy of a child whose life was all too short, but whose impact will be something beyond our capability to understand. People young and old will be touched by the discoveries made through these donations. Families who have donated find great comfort knowing their little hero may one day change the world the way we know it.
Families who have received a life-limiting diagnosis face a wave of emotion. As the remainder of their pregnancy may be wrought with grief, many family have taken some sense of comfort knowing that their baby may be able to donate organs or tissues. We have heard from donor families that just knowing there was an option for donation gave them hope; somehow their ability to ‘parent’ through medical milestones gave such comfort in a sea of pain.
Why is IIAM so passionate about providing this opportunity to bereaved families? Why do you believe all families should have access to information about neonatal donation for research?
Our passion to assist these special families originated from our very first donor. The power beyond that family’s decision to carry to term and proceed with donation moved everyone, from our own organization to the hospital team to the organ recovery organization. It was a special moment–one where all of the stars aligned, as if this was the beginning of their mission and ours–to advocate for other families facing the same terminal outcome for their baby. I believe their ability to donate changed their lives forever–and they paved the way for over one hundred more families as a result.
There is still very limited awareness of research exclusive to donation from neonates with a terminal diagnosis who are carried to term and die from natural causes. Our hope is that families find information that presents options for them as they face the remainder of their pregnancy.
Not all families have access to care providers who are informed about the opportunities regarding neonatal donation for research. Can families get in contact with IIAM directly to get more information and start the process?
Yes, I believe the internet now has more information that can assist a family with donation options for neonates. Our own information is readily accessible on our website, and there are other websites started by donor families who share their story and point to resources such as IIAM.
There are many medical professionals involved in the organ and tissue donation process, including organ procurement organizations (OPO). What are OPOs, what role do they have in this process, and how does IIAM work in collaboration with them to provide neonatal donation support, information, and guidance to families facing a prenatal diagnosis of a life-limiting condition?
There are 58 organ procurement organizations (OPOs) in the U.S. They are federally designated through the Organ Procurement and Transplantation Network (OPTN) and are managed under contract by the United Network for Organ Sharing (UNOS). The OPOs perform the life-saving mission of recovering organs from deceased donors for transplantation. Because of their primary role in promoting organ donation, and with language on the authorization form completed by legal next-of-kin that includes options for medical research (when an organ may not be suitable for transplantation), the OPO plays a major role in allocating organs for transplant as well as for medical research. The OPO interfaces with the donor family, which may include a neonatal donor family. When the OPO is encountering a neonatal donor family, they contact IIAM and discuss options. Together, we support the family’s desire for donation and exhaust all efforts to see it through.
Neonatal organ and tissue donation for research can be an incredible opportunity for families to create a legacy in honor of their precious baby, but it can also seem really overwhelming and scary for them as well. How does IIAM’s neonatal donation program help parents navigate this experience? What is the process like from initial contact through post-donation?
Because the life-limiting diagnosis is often received well into the pregnancy, there are still several weeks until the baby is due, and the family uses that time to consider options and make decisions. Through the OPO, IIAM presents information about the donation and the research so a family can fully embrace this avenue and make an informed decision. Both IIAM and the OPO then take steps to make a plan that works well with the family, the OPO staff, the family’s doctors, and the researchers who may receive organs and tissues. Many factors must align, but we make sure the family is fully informed so there are no surprises and no disappointments.
Does IIAM and the team member(s) caring for an individual family help the parents understand what tissues and organs could potentially be viable for donation and how that donation might be utilized? Do you provide comprehensive, individualized information about all the possibilities, including the fact that donation may not be an option, as so many factors are not determinable until delivery?
Yes. The most important part of this entire process is transparency. We disclose what is possible but never guarantee. Every family choosing donation should be viewed as a donor family despite the outcome.
Logistical factors may arise that prevent an organ from getting to a research facility in time, and all parties involved are aware. Clinical factors may also arise, specifically that the time organ procurement must occur after time of death. If time of death occurs shortly after birth, a family may choose to spend more time with their baby and forego donation, and we all respect whatever decision a family makes regardless of any anticipated donation. They must be comfortable with their decision and when they are ready to present their baby for organ procurement. There are times when a family spends several hours with their baby prior to time of death, and organ procurement proceeds as planned. As often as possible, and as indicated in a birth plan that may include donation as an option, the family may have a greater desire for organ donation to proceed and ask to spend additional time with the baby afterward.
IIAM works with many researchers who are studying almost every organ and a variety of the tissues that can be donated. Can you share an example of how a neonatal donation has been utilized by one of these researchers and how their work has been advanced by the generous gifts of these families?
To use the example in the first question, IIAM has worked with a research group who have received nearly 100 organs and tissues through our neonatal donor program. Their work is advancing the understanding of lung development and how chronic lung disorders evolve. By studying the many different kinds of cells developing within infant lungs, researchers can see how one cells can signal a neighboring cell which is important in the regenerative medicine space–it shows how they make the ‘get up and go’ conversation happen!
Are there any resources that help medical providers like obstetricians, perinatologists, perinatal nurse navigators, and clinical social workers feel more informed and equipped to navigate neonatal tissue and organ donation and the experiences of these families?
IIAM’s website has many resources to navigate a conversation with a neonatal donor family. We also provide many other resources for the medical professional and family members to consider.
Following a donation, does IIAM or the researchers who have received a family’s gift of organ and tissue donation provide any follow-up information about how that gift is used or how it has benefitted the researchers’ work? Can parents learn more about the researchers and the work they are doing if the parents are looking for that connection?
Through the OPO, IIAM provides a donor family information regarding the donation, the research, and any other information the researcher may have provided. It is not uncommon that a researcher will continue to provide additional updates of a study that was made possible as a result of one of IIAM’s donors. We are very excited to pass that information forward when that happens. With the permission of the OPO and the researcher, we would do our best to facilitate a conversation with all parties involved if more information were requested by the donor family.
Is there anything else that parents and families should understand about neonatal donation for research? What advice do you have for families who are considering neonatal donation for research?
Our message would be that neonatal donation is possible. Medical researchers are grateful when they can receive donor organs and tissues from these very special, very young donors. All parties are profoundly in awe of their decision to consider donation. I don’t know that they will ever quite understand the power behind their decision.
WHO WE ARE
The International Institute for the Advancement of Medicine (IIAM) is at the forefront of providing non-transplantable, healthy and diseased, human organs and tissues to the medical research community for purposes of combatting and curing disease. Working with every organ procurement organization in the U.S., IIAM receives over 15,000 organ referrals for research each year. We enter into unprecedented research collaborations to source livers and other organs for therapeutic applications and pre-clinical investigations targeting a range of debilitating metabolic disorders. IIAM’s breadth of services also includes a Neonatal Donor Program that provides neonatal organs and tissues for medical research, education and development. These neonatal donors are babies with fatal fetal diagnoses who will pass from natural causes shortly after birth, typically with 37 weeks of gestation and greater. This program provides an opportunity for families to leave a legacy of their baby, and offers a unique and invaluable service to researchers in need of these precious tissues.
As a non-profit with more than 30 years of experience in the field, IIAM is a known and trusted partner to both organ procurement organizations and research institutions worldwide. We work closely with them to honor donor and donor family intentions to the fullest by anticipating the next frontier of research requiring human tissue. And we lead the way in educating the next generation of researchers so that every donor’s legacy leaves the world a healthier place. Please visit our website at www.iiam.org.
Carrying To Term is a national 501(c)(3) nonprofit organization dedicated to broadening access to non-directive educational, logistical, and emotional support resources for prenatal diagnoses of life-limiting conditions. For more information, please visit www.carryingtoterm.org.