Thoughts a Family May Have
We appreciate your desire to donate. Here are some questions you may have when considering neonatal donation as an option for your baby’s legacy.
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.
Professional Inquiries
Questions that professionals may have about how to respectfully and properly facilitate the process of neonatal donation.
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.