LifeShare Labor of Love Neonatal Donor Program

Why donate?

Many people wonder why donation is important, especially in the case of infants.

Donation can directly save a life through organ transplantation. If transplantation is not possible, neonatal donation is also beneficial by allowing researchers to develop life-saving techniques, procedures, and medicines. In many instances, neonatal organs produce specific enzymes which are only found in the human body for a limited amount of time. The body stops production of these enzymes as it develops. Having access to these enzymes has held the key to medical discoveries. Many donor parents find comfort in knowing their child saved the lives of others.

Who can donate?

Donation is an incredibly rare opportunity. Any expectant parent whose baby has received a fatal fetal diagnosis and will die from natural causes during or soon after birth may have the opportunity to save lives. We appreciate your interest in donation and want to support you through the process of creating a legacy for your baby if donation is right for you.

What can be donated? How are donations used?

Organ donation for transplant is the type of donation most people think of when they hear “organ donation”. There are many factors that affect whether or not organs are able to be transplanted. Often for neonatal donation, kidneys are the only organs that can be transplanted due to the size of the organs. If transplant is not an option, it may also be possible to donate organs for research to work toward cures for various diseases that affect people of all ages. Organs that can be donated include the heart, lungs, liver, kidneys, pancreas, and intestine. A few examples of past research include cardiac disease prediction, susceptibility to chronic kidney disease, developing treatment for early childhood and chronic lung disorders, and developing a cure for type 1 diabetes.

Heart valves may also be donated as life-saving tissue. It is also possible to donate tissue for research, which can contribute to great medical advances.

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How long do I have to make a decision about donation?

Because a life-limiting diagnosis is often received well into the pregnancy, there are still several weeks until your baby is due and you can use that time to consider options and make decisions. LifeShare will work with you and support you throughout that decision making process.

What can I expect from the process?

Once the expectant parent has made an informed decision to pursue donation, LifeShare will coordinate with the family and the family’s chosen care team to outline a birth plan that works for the family and will allow for donation. Someone from LifeShare will review consent and authorization forms with you. You will need to have routine bloodwork done and provide information on your medical and social history. As your birth plan is established and finalized, LifeShare and your chosen care team will continue to support you up until and throughout delivery.

Pistol Annie Ahern and her brave parents,
Abbey and Robert share her incredible story.

Pistol Annie became the very first newborn infant organ donor in the state of Oklahoma on June 26, 2013.

How much time can I spend with my baby before recovery takes place?

Parents may desire to hold their baby until they pass, and even beyond. For families who choose this, it is an extremely important part of bonding with their baby. LifeShare and the family’s care team need to maintain a keen awareness of the time constraints related to donation. Please remember that balancing this time is critical to accommodate both the parent’s needs and the need to preserve the gift of donation. LifeShare will support you through honoring your plan and the donation process.

How does donation affect funeral/memorial service plans?

LifeShare works closely with all state funeral homes and mortuary services to ensure donation does not delay or affect your family’s funeral/memorial service plans.

Does it cost anything?

Donation does not cost donor families. Costs associated with recovering organs and tissue for transplantation and research are the responsibility of LifeShare. We recommend you discuss any hospital or customary labor and delivery expenses with your chosen care team, so you have clear expectations.

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How does LifeShare provide support throughout the pregnancy and delivery?

LifeShare’s Family Services staff is ready to provide support throughout the process to the extent family desires. If intention to donate is indicated earlier in pregnancy, LifeShare will provide a couple points of contact to ensure family always has someone to reach out to and will be present for appointments and/or multidisciplinary meetings with the family’s care team to ensure families are provided with the best support. LifeShare's coordinators will be on site on the day of delivery and until baby passes. After your baby is born, LifeShare staff are typically the ones to transport your baby to the recovery location and will stay with them until recovery process is complete. LifeShare can provide some memory making if family desires and can assist with other memory making initiated by family before or after your baby passes. In addition, LifeShare can help get or provide Child Life assistance to provide support to your baby’s siblings.

How does LifeShare provide support after the donation process?

LifeShare aims to provide the highest level of service to our donor families through support from our Aftercare Program.

The year following the donation, LifeShare provides a variety of support services including: the outcome of your baby’s donation, the opportunity to make a quilt square, grief materials, surveys for feedback and participation in the Donor Family Ceremony. Additionally, we can help facilitate correspondence between you and the recipients of your baby’s gift.

LifeShare realizes transplantation would not be possible without the generosity of donor families. A family's choice to donate is truly a selfless act. We greatly appreciate your generosity and LifeShare is here to support your family.

Where do I begin?

If you are considering neonatal donation and would like more information, the first step is to contact LifeShare directly or communicate your interest to your chosen care team. 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.

You can email us anytime at [email protected] or call 1-800-241-4483