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.
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...
How long can the mom/dad be with their baby before they need to release him/her for organ recovery?
It is entirely the choice of the parents and family as to how long you can be with your baby, as we understand this time is precious and the duration is unpredictable. The parents may desire to hold their baby until he or she passes, and even beyond. For families who choose this, it is an extremely important part of bonding with their baby. The donor program 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 parent’s needs and the need to honor the gift of donation, should that remain your desire.
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 of mom or baby and/or mechanism of injury or circumstances leading to death, if applicable.
- Known positive cultures/infections would be important. Organ specific labs or enzymes required by the researcher may be requested at the time of donation, if available.
- If possible, and to be sensitive to the parent’s 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 research from neonatal donors?
Presently IIAM is working with researchers who are studying nearly every organ as well as different tissues.
All potential placements should be reviewed with IIAM prior to any discussions with the family. This prevents the family from feeling mislead, and allows IIAM to explore every opportunity available at the time organ/tissue procurement is likely to take place. Medical factors and logistics are taken into account and vary throughout the case.
What kind of research will benefit from these precious gifts?
Please contact IIAM to review potential placement opportunities and associated research. Opportunities continue to grow and may vary with each donor.
What kind of perfusion and recovery protocol is necessary for each organ?
Upon the acceptance of each referred organ, IIAM will provide a detailed Recovery Protocol that will include specific details regarding each organ/tissue recovery, perfusion requirements, preparation and transportation. Any additional bloodwork or samples from the mom and baby will be indicated 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 the 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.