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.
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."
Neonatal Fast Facts: General information about various diseases and the medical research being conducted to help combat and cure them with donated neonatal organs and tissues.
Neonatal Guidelines: General information about the guidelines and communication needed in coordinating neonatal donation of organs and tissues for medical research.
Neonatal, The Journey: Common questions and answers for families considering neonatal donation with additional resources for them to consult.
How long can the mom/dad be with their baby before they need to release him/her for organ recovery?
The parents may desire to hold their baby immediately after birth. For families who choose this, it is an extremely important part of bonding with their baby. OPO and hospital staff need to maintain a keen awareness of the time constraints set forth by the researchers. Please remember that balancing this time is critical to accommodate both the parentís needs and the need to honor the gift of donation.
What bonding options can a donor family consider after organ/tissue recovery is completed?
A viewing and time with the baby, prearranged by the OPO and donor hospital, may be helpful to meet the family's needs for additional bonding. Families should be informed that there will be a change in appearance and weight of their baby after donation and should be given the option to make arrangements with a funeral home if they do not request additional time.
Do we need a medical/social history from the mom in order to move forward with the screening process?
Yes. The medical/social interview is essential to the screening process for donation. Additional information needed about the mother includes: hospital admission course, history of present illness and/or mechanism of injury, if applicable.
Also, known positive cultures and customary OPO donor laboratory profile information, if relevant, would be important. Organ specific labs or enzymes required by the researcher will be requested at the time of donation.
If possible, and to be sensitive to the parentís emotional needs, collecting this information pre-delivery would be optimal.
Do we need to perform serological testing on the donor mom?
Yes. A standard infectious disease panel will need to be done including: HIV 1/2, HBV, HCV, RPR and CMV. EBV and NAT testing are preferred but may not be required. All serologies will need to be negative with the exception of CMV, EBV and HBsAb (with confirmed vaccination).
What organs are potentially able to be recovered and placed for medical education and research from neonatal donors?
Liver with Biliary Tree
All potential placements should be reviewed with IIAM prior to discussions with the family in an effort to not mislead them about donation options that are not viable for every donor.
What kind of research will benefit from these precious gifts?
Heart - Neonatal hearts provide a valuable source of certain cardiac cells that can be used to better understand how new medicines are metabolized. This allows researchers to design safer treatments without risk to patients in clinical trials. Additionally, these neonatal hearts can help researchers identify specific markers that have predictive tendencies for cardiac disease. Knowing these targets in advance allows research to be directed toward preventative therapies.
Liver - Neonatal livers provide a source of new and developing liver cells to help researchers understand how to safely and effectively place donated cells into people whose liver cells are no longer working. Researchers have found that there may be a lower rejection rate of cells from neonates, less use of anti-rejection agents and a lower risk of illness to patients receiving liver cells when this technique is perfected. In addition, researchers can utilize the donated tissue to explore other liver diseases such as cirrhosis, hepatitis and diseases caused by obesity. In figuring out how new medicines are metabolized, researchers can be instrumental in designing safer treatments.
Lung - The donor gift will help researchers to develop techniques for identifying, tracking and learning the function of lung stem cells and of many other cell types that comprise the complex lung organ. Ultimately, researchers are trying to understand normal lung development so they can better understand abnormal development and disease that happens in newborn children especially because of premature delivery.
Pancreas - Neonatal pancreata enable scientists to gather important information about how the pancreas grows and develops. Type I diabetes is most common among children and young adults who must inject insulin in order to survive. To understand what causes type 1 diabetes and to develop new treatments, scientists need to learn about the pancreas from the earliest stages. Once researchers understand how the pancreas develops and begins to produce insulin, they may be able to use the discovery to prevent or cure type 1 diabetes.
When possible and applicable, share this information with family pre-birth.
What kind of perfusion and recovery is necessary for each organ?
Upon the acceptance of each referred organ, IIAM will provide a detailed Recovery Protocol that will include perfusion methods and other transport criteria as well as blood sample requirements from the mom and baby as necessary.
IIAM and the OPO will work closely together up to and after organ and tissue recovery to ensure all necessary details are provided. Continue to be proactive asking questions and offering input whenever necessary.
If it is found that organ donation cannot take place for any reason, inform the family as soon as possible to allow them time to make arrangements, edit their birth plan, and be mentally and emotionally prepared.