Once you and your family have decided you would like to participate in some form of neonatal donation, the first step you need to take is to contact your local Organ Procurement Organization (OPO). Your OPO is the organization who will actually make your donation possible.
You can find your local OPO through the Association of Organ Procurement Organizations’ website (http://www.aopo.org/find-your-opo/). Simply click on your state located on the map, and you will be brought to a list of OPOs in your state. Then contact the one nearest you.
Once you have contacted your local OPO, explain to them your baby’s diagnosis, your baby’s current gestation age, your tentative due date or C-section date, and the specific types of donation that you are interested in pursuing. If you want, you can use our Questions to Ask OPO document to guide you through your initial contact . You may also find it helpful to use our Neonatal Donation Preliminary Information Document (also available in Spanish) a tool to organize all of the information that your OPO will need from you. Once you have filled out the form, or created one of your own, you should give it to your OPO.
Some OPOs may hesitate to assist in a neonate donation at first. If this happens, you can direct them to our website for more information. Other OPOs have established special programs for families considering neonatal donation. It is important to make your desires known, to be proactive, and to ask lots of questions.
Contact your OPO as soon as you have the desire to donate, even if it is several months before your estimated due date or scheduled induction date. This will give your OPO time to work with you and develop the best plan for you and your specific situation. At a minimum, it is best to give your OPO at least a month to prepare. If you did not consider donation until later in the pregnancy and you have less than a month before delivery, contact your OPO as soon as possible.
If you would like to participate in donation for research, explain this to the OPO. Then ask the OPO to contact the International Institute for the Advancement of Medicine (IIAM), (http://www.iiam.org/). IIAM is the nation’s leading placement organization for non-transplantable organs and tissue, and partners with OPOs from all over the country, helping them connect donations to researchers who will be able to use these precious gifts for medical advancements. Most OPOs already have a partnership established with IIAM. Many OPOs do not have resources to place donation for research on their own and will need the help of IIAM to make the research donation successful.
In the spring of 2013, IIAM established a neonatal organ donation program (the first of it’s kind in the U.S.) which has been specifically designed to help families who are carrying a baby with a terminal diagnosis. The staff at IIAM are extremely compassionate and are willing to help families any way they can. You can learn more about their program by going to http://www.iiam.org/NeonatalDonorFamilies.php. Even if your desire is to participate in a donation for transplant, having your OPO contact IIAM about the possibilities of donation for research can be helpful and can provide additional opportunities for your little one to make a lasting impact.
Once you have made contact with your OPO, you will want to discuss donation possibilities and options with your obstetrician/midwife so he or she knows what your plans are once you have given birth to your child. You may want to discuss the possibilities of either induction or a C-section depending on your situation, diagnosis, and personal preference. Having a somewhat established timetable for delivery can make the logistics and coordination of donation easier. Your OPO should work with your obstetrician/midwife and specified hospital to create an action plan for the organ recovery. If it is helpful, you can use our Request to Contact Organ Procurement Organization (also available in Spanish) form to facilitate communication between all parties. Once you have filled out the form, or created one of your own, give a copy to your obstetrician/midwife and one to your OPO.
Before giving birth to your child, you will also need to meet with your OPO to have blood work completed and to fill out paperwork and consent forms. It is best to do this before you go to the hospital to deliver your child to make things flow easier the day of delivery.
As you prepare to meet your little one, you may want to create a birth plan. This will help the hospital staff know your desires surrounding both the birth of your child and your prearranged donation. It is important to realize that if you are going to participate in any form of donation, specific timetables will need to be established in advance. Once your child has passed away, organ and tissue recovery needs to happen quickly to allow the donated organs and tissue to be usable. In some cases, organs and tissue will need to be recovered within minutes of your baby passing. In other cases, organs and tissue will need to be recovered within hours.
Once your baby has completed the organ donation process, you may desire to spend more time with your baby. You may request to have your baby returned to you, so you can continue to bond with your baby and make special memories. If you do not wish to see your baby directly after the donation process, you may arrange for your child to be transported to a local funeral home. Funeral home directors can prepare your baby further before you see him/her again, if this is your desire.
It is important to note that your child’s physical characteristics will change somewhat during the organ donation process. Specifically, there will be changes in body temperature, color, and weight. Each family makes different choices as to whether they want to spend more time with their baby immediately following donation. It is important to state these preferences in your specific birth plan and make your desires known to your OPO and hospital before donation occurs.
Although it may be difficult to read about the process of donation, we feel it is very important to know the steps involved, and we want potential donor families to be prepared. We also want to state that, due to a number of variables and outside factors, despite everyone’s best efforts, sometimes donation may not be possible. Exploring every option and knowing the facts surrounding donation will help you be prepared as you walk through your specific journey. In the end, we hope that pursuing donation will help bring peace and healing to your family.