Neonatal Donors and Families
Please know our thoughts are with you and your family at this time. We appreciate your desire to donate, and are happy to support you in creating a legacy for your baby.
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, transplantation allows donated gifts such as a liver, kidney or heart to save a life.
Unfortunately, transplantation is not an option for every donor. However, your baby may be able to donate organs and/or tissues to medical research and education that can benefit many, many lives.
The International Institute for the Advancement of Medicine (IIAM) is a non-profit organization that works with medical researchers in the U.S. and abroad.
We support families making donation decisions to find ways for their loved one’s gifts to help others. Through your local organ procurement organization, we will work very closely with you and your medical team to explore as many options as possible to provide a legacy for your baby through donation. Despite all of our efforts, donation may not always happen and we encourage you to have alternate plans in place as you near your delivery date.
Sophia Hope Purdy
This is the story of the Purdy family, parents Lacy and Ethan and their daughter Maddie, who worked with the staff at We Are Sharing Hope SC, the South Carolina Organ Procurement Organization (OPO) for organ and tissue recovery services in SC, and in collaboration with Greenville Memorial Hospital. The Purdy’s baby, Sophia Hope, was diagnosed with anencephaly 14 weeks into Lacy’s pregnancy. Upon her birth on May 9, 2019, Sophia Hope lived for 8 hours in the loving arms of family members. Sophia Hope went on to donate several organs and tissues for transplantation and medical research thus saving and enhancing the lives of many. Her spirit lives on through these gifts.
The Conkel's Story
Below, view the story of Amalya Nathaniel Conkel, 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.”
“My son. My sweet, precious baby boy…” | Read Bethany’s Story on TheMighty.com.
Thoughts You May Have...
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 remain 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?
You will not incur any additional costs related to the donation. 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 Consent 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, including but not limited to HIV and hepatitis.
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 nearly every organ as well as different tissues. 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. It is important to understand that many factors are considered when determining what ultimately can be donated, and while every effort will be made to support your wishes for donation, clinical and logistical factors may determine that it is not always possible. Having an alternate plan is important for you and your family to discuss.
What happens to my baby when the donation has been completed?
Upon completion of the organ and/or tissue recovery, the hospital team will present 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, to the degree possible, 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.
- Below 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.
- Alexandra’s House – Resources; in-person support; 3D ultrasounds; care packages; support groups for perinatal hospice, pregnancy and infant loss families in Missouri
- Anencephaly Angels Facebook Group – Private Facebook group for any family who has received the diagnosis of anencephaly, regardless of their choice to continue or end the pregnancy
- Anencephaly Hope Facebook Page – Facebook group to support families who have received the diagnosis of anencephaly; free custom care packages and hats for currently pregnant families; keepsakes for purchase for grieving families
- Anencephaly Info – Most comprehensive resource regarding anencephaly, available in multiple languages. Includes facts, stories, photos and detailed information
- Anencephaly.Info Facebook Group – Private Facebook group for families who are continuing a pregnancy after the diagnosis of anencephaly
- Be Not Afraid – Catholic based online support and information for families continuing a pregnancy to term after an adverse diagnosis
- Carrying To Term – Resources and information to help families continuing a pregnancy after a terminal diagnosis, and educational support to medical professionals
- The Haven Network – Resources; in-person support and photography for pregnancy and infant loss families in Illinois
- HEALing Embrace – Information; care packages, in-person support and photography in Nebraska; monetary support for funeral and medical expenses for pregnancy and infant loss families
- Molly Bears – Weighted memorial bears made the same weight as your baby for pregnancy and infant loss families
- Mommies Enduring Neonatal Death M.E.N.D – In-person support in Texas; online support for families after the loss of a baby
- National Birth Defect Registry – National registry for birth defects to help with research and finding causes and cures for various birth defects; can participate even after your loss.
- Now I Lay Me Down to Sleep – Free photography for pregnancy and infant loss families; photographers throughout the United States
- Perinatal Hospice Website – Clearinghouse of information and resources for perinatal hospice and palliative care
- Perinatal Partners for Life – Information and care packages for families continuing to term after an adverse diagnosis
- Poor Prenatal Diagnosis – Information hub for various poor and terminal diagnoses in pregnancy
- Purposeful Gift – Information about neonatal organ, eye, tissue, and whole body donation; phone and e-mail support; printed materials
- Share Pregnancy and Infant Loss support – Resources; online and phone support; in-person support in 29 states; resource packets for pregnancy and infant loss families
- Still Standing – Resources and articles surrounding topics of grief and loss, specifically for pregnancy and infant loss families
- String of Pearls – Information; care packages; in-person support in Colorado; after care for families who have received a terminal diagnosis
- Sufficient Grace Ministries – Information; care packages; free online birth plan; online support; in-person, photography, and after care for pregnancy and infant loss families in Ohio
- Sweet Grace Ministries – Information; local care packages, in-person support, photography, and after care for pregnancy and infant loss families in Pennsylvania
- Trappist Caskets – Free caskets and urns for pregnancy and infant loss families
Anencephaly Specific Resources
These websites were designed 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 much more.