Here are a few frequently asked questions.
Many people wonder why donation is important, especially in the case of infants. Donation can be important on many levels.
- It provides another opportunity for families to create a legacy for their child who may not live long after birth. For some families, donation adds an extra layer of meaning or purpose to their baby’s short life. It has also helped many in the healing process.
- Donation can directly save the life of another baby. Many parents find it comforting knowing they have prevented another family from experiencing the same type of grief that they themselves are feeling. They are happy that, although their own child was not able to live, another life was saved.
- Donation can indirectly save lives 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. In some cases, having access to these enzymes has held the key to medical discoveries.
Does donation occur while my baby is still alive?
No. When working with neonatal donations, whether the donation is for transplant or research, donation occurs once there has been documented cardiac death and the heart is no longer pumping. (In some adult donation cases, a patient is kept on life support equipment while specific organs are recovered; for example: one kidney, one lung, or a partial liver. Once this first step of recovery is finished, the adult is taken off life support equipment. When a natural death has occurred, the recovery team will go back and recover the rest of the organs which are being donated; for example, the second kidney, the second lung, and the heart. This process is NOT used in neonatal donation.)
Will my baby need to be put on life support or intubated to participate in donation?
This depends on the type of donation. For tissue donations for transplant, as well as organ/tissue donations for research, the answer is no. If there will be an organ donation for transplant that has been pre-determined by your local organ procurement organization, life support may be needed. This will need to be discussed in detail with the local OPO.
What gestation age does my baby need to be in order to participate in donation?
This depends on the type of donation and what state you live in. If you are donating organs or tissue for transplant, most states require your baby to be a minimum of 36 weeks gestation to donate (please check with your local OPO for rules in your state). If you are donating organs/tissue for research, each researcher has different rules on the gestation age per the research needs, but typically, lower gestation ages are accepted. Currently, 24 weeks gestation is the youngest gestation age being used. Please have your OPO check with IIAM (International Institute for the Advancement of Medicine) to learn specifics about what current gestation ages researchers are accepting.
If my baby passes away in utero, can he/she still participate in donation?
Sometimes. This will depend on when your baby has passed and how soon they are born once death has occured. With any donation, recovery needs to take place in a specific window of time. If the baby has passed away in utero and a specific time of death was able to be established, and if the baby is born with enough time to meet the time requirements for recovery, then yes, they should be able to participate in donation. You will need to speak with your local OPO to learn more about laws in your state.
Can my baby participate in multiple types of donation?
Yes, as long as your baby meets all the requirements and there is a donation need. For example, if you donate heart valves for transplant, it may also be possible to donate other organs or tissues for research (depending on the current needs).
If I donate for research, will I be told what the organs will be used for?
Typically yes, you will be told the general goal or purpose of the research being done with the donated organ or tissue. Once donation has occurred, you are not guaranteed to receive any follow-up information on how the donation was specifically used. However, the organization who places your donation will often go above and beyond to help you learn more about the use of your gifts, if you desire. In rare cases, researchers are even willing to write letters or give follow-up information to the family directly, but this is not the norm.
Will I have the final say on what organs/tissue I would like to donate?
Yes, you will have the final say on any and all donations before recovery takes place.
My baby has anencephaly. I was told that I could not donate for any reason. Is this true?
No, this is not true. Babies with anencephaly may participate in tissue donation for transplant, as well as organ/tissue donation for research and, in some cases, organ donation for transplant. Specific requirements may need to be met for donation to occur, but a diagnosis of anencephaly does not automatically disqualify your baby from donation. Please see Donation Facts for more information.
How much will donation cost my family?
There are no charges to a family for donation. Local organ procurement organizations will make sure all costs are covered when donation for transplant is happening. If you are donating for research, the organization that sets up the donations will cover the cost of the donation. You will be responsible for the regular hospital bills surrounding delivery and hospital care for you and your baby. You will also be responsible for any costs incurred if your baby is placed on life support or is intubated.
If I want to donate, what is the best birth method to make donation possible?
Delivering via C-section is the best birth method when a donation plan has already been established. This allows for a recovery team to be ready as soon as your delivery begins. This also allows the individuals or research groups who will receive the organs to be a little more prepared to receive your life-saving gifts.
The next best delivery option would be a scheduled induction. Again, this allows the recovery team to be a little more prepared to assist at the appropriate time.
The uncertain timing of natural delivery can be difficult on a recovery team as they can not always stay on standby for extended periods of time, but it does not make donation impossible by any means. If this is your chosen delivery method, discuss various possibilities with your local OPO.
Any form of delivery that is best for you and your family will be incorporated into the overall organ recovery plan established by you, the OPO, the hospital, and the organization(s) receiving the donated organs. It is important to realize that, depending on the type of donation, researchers may not be able to receive organs if they are recovered on a weekend or holiday. You may want to consider this if you are having a planned C-section or induction. For example, a Monday may be the best day for you to deliver your baby if you are donating for research.
Can I still spend time with my baby after the recovery takes place?
Yes. Many families opt to spend more time with their baby after the recovery takes place. This allows for you to continue to bond with your little one and make lasting memories. This can be set up with your specific hospital staff and OPO.
If we let our baby participate in whole body donation, will we receive our child’s ashes once the research is finished?
Yes. If your baby participates in whole body donation you will receive your child’s ashes back once the research is complete. The organization who established the donation will contact you and let you know that research is finished, and they will set up a delivery date which is convenient for you. If you do not wish to receive your child’s ashes back, the organization who established the donation will respectfully lay your baby to rest.
Will I need to fill out paperwork or give formal consent in order for donation to take place?
Yes. Prior to donation you will need to meet with your local Organ Procurement Organization to fill out paperwork including background information about the mother as well as paperwork to give final consent to allow for donation. The mother will also need to have blood taken and tested prior to donation. Please see Steps to Donation for more information.
If you have a specific question that is not answered on our FAQ page, please contact us with your question. We will do our best to answer any question you may have.