You may have already met with your local organ procurement organization. They may have discussed donation options with you. If you have not yet met with your organ procurement organization, we can help you get in contact with them.
As you will learn, human transplantation allows for donated gifts such as livers, kidneys or hearts to save lives.
Unfortunately, transplantation is not an option for every family. However, your baby may be able to donate gifts to medical research and education which can benefit many, many lives.
The International Institute for the Advancement of Medicine (IIAM) is a non-profit medical research organization that works with researchers and medical education organizations in the U.S. and abroad.
We support families who make donation decisions to find ways for their loved one’s gifts to help others. We will work very closely with you, your doctor, your delivery hospital, and your local organ procurement organization to provide a positive outcome in the midst of a tragic experience.
The Conkel's Story
Below, view the story of Amalya Nathaniel Conkel, the neonatal baby whose donations provided precious gifts to medical research and led to the beginning of IIAM's Neonatal Donor Program. | See Their Story, Featured on Yahoo's Home Page
Condensed Story (5 mins)
Full Story (10 mins)
When I Rode on a Float in the Rose Parade to Honor My Son's Incredible Gift
"I sat there in complete awe of the events unfolding around me. It was like I was in a dream. I had a smile on my face so wide that it actually hurt. My momma's heart overflowed with pride. With one hand I waved vigorously to a sea of faces, with the other I held tightly to an eight-by-10-inch picture."
"On January 1, 2016, I had the amazing privilege and honor of ringing in the New Year by riding on the Donate Life float in the Rose Parade in Pasadena, California. Although it was a joy to ride, I did not ride for myself. I rode in honor of the person framed in that eight-by-10-inch photo."
Will I be able to hold and see my baby after he or she is born?
Yes, your care team will work very closely with you so that you will have bonding time with your baby. You and the medical team will be made aware prior to delivery of any critical timelines for consideration to ensure donation of your baby’s gifts remains possible. Your care team will support you to help balance personal time without compromising the recovery of the gifts.
You may also arrange time after organ recovery to hold your baby and proceed with any additional personal plans if you wish. Otherwise, we suggest you make arrangements with a funeral home and communicate this with your care team.
Will there be any expense to my family as a result of donation?
IIAM will incur all expenses related to the donation of organs and tissue for medical research to our organization. We recommend you discuss any hospital or customary delivery expenses with your caregivers so you have clear expectations.
What do I need to do?
1) Consent/Authorization: You will need to complete a form with the local organ procurement organization.
2) Blood Work: Blood work will be obtained to determine blood type and Rh factor of the mom. The blood will also be evaluated for standard infectious disease screening.
3) Medical-Social History: Completion of a questionnaire will provide the organ procurement organization with an understanding of important past medical history and social behaviors of the mom.
What donation options can we consider?
Presently IIAM is working with researchers who are studying neonatal hearts, livers, lungs and pancreas. You may be able to donate all or some of these gifts. If there are multiple options, you will have the final decision as to what best meets your needs and wishes.
What happens to my baby when the donation has been completed?
Upon completion of the organ recovery, the hospital team will return your baby to you unless other arrangements have been made. Arrangements with a funeral home will need to be specified and will proceed as arranged.
If requested, IIAM will notify you when the research studies are complete, typically about 6 months from the time of donation. IIAM will provide you with feedback from studies and outcomes, if desired.
Is there someone I can contact for more information?
You can communicate with a Family Services Coordinator at IIAM with any additional questions or needs you may have: 800-486-IIAM (4426).
Once this process begins, we will pair you with one of IIAM’s team members who will partner with you and guide you through the donation process.
Attached is a list of other resources you may find helpful as you go through your journey.
Please know our thoughts will remain with you and your family. We deeply appreciate your desire to donate.
Sustaining Grace is a non-profit organization whose mission is to provide free 3D/4D ultrasounds to families who have received a terminal diagnosis during pregnancy. The goal is to give families special bonding time with their child.
Prenatal Partners for Life is a non-profit whose goal is to encourage families to carry babies to term after receiving a negative diagnosis. They provide information, stories and support aids on the website. They also provide free “gifts of love” care boxes for families upon request.
Perinatal Hospice and Palliative Care is another organization that provides resources for families who have received terminal diagnoses. Among their many resources, they highlight a book: A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to Be Brief which is a leading book on coping with a life limiting diagnosis.
String of Pearls is another non-profit whose goal is to support families after receiving a terminal diagnosis. They provide a free “care/memory kit” to use at the hospital to help families create memories with their baby.
Now I Lay Me Down To Sleep is a group of photographers who donates time and services to families. All photographers in this group have been trained in assisting families facing infant loss, and provide services free of charge.
These are two of the most helpful websites for families carrying babies diagnosed with Anencephaly. Both have extensive information, stories, and in-depth resources (including birth plans, memory making ideas, grief counseling info, and TONS more).