The first thing to understand when considering neonatal donation is the fact that there are multiple types of donation. Each type of donation has different requirements and policies. Knowing the difference between the types of donation will help your family make an educated decision on what type of donation will be best for you and your situation.
Please Note: Neonatal donation, regardless of the type, will ONLY occur after the heart has stopped beating, and the baby is no longer alive. An organ or tissue recovery surgery will NOT occur if the baby is still alive, or still has a heartbeat.
Summary of Types of Donation
This chart is a summary of each type of donation in relation to neonate donors. Please read the detailed sections below to learn the specifics about each type of donation. Please keep in mind each Organ Procurement Organization has different requirements and it is always best to check with the OPO in your area to learn more.
| Organ Donation for Transplant | Tissue Donation for Transplant | Organ or Tissue Donation for Research |
|---|---|---|
| Cardiac death (and in some cases brain death) needs to be established | Cardiac death needs to be established | Cardiac death needs to be established |
| May need to be intubated prior to donation | No intubation needed | No intubation needed |
| Baby must meet weight requirements (often strict) | Baby must meet weight requirements (often strict) | Wide range of acceptable weights |
| Small window of time for organ recovery | Medium window of time for tissue recovery | Large window of time for organ/tissue recovery |
| Organs are often fragile, hard to recover for transplant, and currently only a limited number of organs are being considered for transplant | Tissues can be stored for extended periods of time before transplant can occur | Large variety of organs/tissues being used by the research community |
| Limited number of transplant surgeons working neonates. | Babies with a wide range of conditions may be able to participate |
Detailed Descriptions of Types of Donation
Organ Donation for Transplant
This is typically the type of donation people think of when the words “organ donation” pop into their mind. Transplantable organs include the heart, intestine, kidneys, liver, lungs, and pancreas.
Neonatal organ donation for transplant can be tricky for multiple reasons such as the size of the organ, the ability for the organs to transfer well into the recipient, how well the organ has been preserved through the death process, how quickly a recovery surgery will need to take place, and the need to establish specific time of cardiac death (and in some cases brain death). Depending on your baby’s condition and the situation surrounding your baby’s birth and passing, organ donation for transplant may or may not be an option. Often, if you want your baby to qualify for organ donation for transplant, you will need to have your baby on a ventilator prior to passing away and a recovery surgery will need to take place very quickly after established time of death.
In many cases there are so many factors involved in meeting the requirements of donation for organ transplant that this is not a viable option. Recently, there has been a rise in the United States with successful transplant of neonatal kidneys, but options are still limited. Learning the specific requirements in your state regarding organ donation for transplant will help you understand if this is an option for your situation.
Tissue Donation for Transplant
This option includes the transplant of bone, cartilage, corneas, heart valves, tendons, ligaments, and skin. (Please note, this is not a comprehensive list.) The major difference between organ donation and tissue donation is the fact that tissue is less fragile, has different requirements, and has a longer window of time before a recovery surgery would need to take place. Currently, heart valves, corneas, and cartilage are common tissue donations among neonates, regardless of diagnosis.
There are several factors/requirements surrounding neonatal tissue donation for transplant, including: being born after a specified gestation age, being born alive (a few organ procurement organizations will allow tissue donations to be made from a baby who has passed in utero, if a time of death can be established and specified time frames are still able to be met), meeting a minimum weight requirement and, in some cases, living for a specified length of time. Each organ procurement organization (OPO) has slightly different rules and protocol surrounding neonatal tissue donation. Speaking with your local OPO is vital and will help provide a better understanding of the rules in your area.
Tissue donation for transplant has been utilized by many families with positive results. The most common donations in this category are currently heart valves and corneas.
Organ/Tissue Donation for Research
Usable organs and tissues vary depending on current research, but include the same organs and tissue listed above. Like the other forms of donation, donation to research only takes place after cardiac death has been established. Researchers use gifted organs and tissue to find cures for various diseases that affect both children and adults. A few examples of current research include: finding cures for type 1 diabetes using the pancreas; creating safer medications to treat fibrosis, cirrhosis, and other disorders using the liver; and understanding the causes of asthma, cystic fibrosis, and allergies using neonatal lungs.
Donating for research involves several factors that need to be addressed before donation is possible. The biggest factor is the current need for organ or tissue. Researchers have a set number of tissue samples or organs that they need per study. They also have a specific length of time they keep the organs or tissue. If they are “full” with the current number of gifts needed, donation for research may not be an available option. Other factors include specified gestational ages (which varies depending on researcher need, but can occur from as early as viability – about 22 weeks gestation), being born alive (in a few instances researchers may be able to still use organ or tissue from a baby who passes in utero, if a time of death can be established and specified time frames are still able to be met), having the organs recovered in a specific window of time, and the baby’s diagnosis or cause of death
Donation for research is the most flexible option for neonate donation due to the wider range of gestational ages and no current birth weights restrictions. Sadly, this option is often overlooked. Some families also do not realize the importance of donating to research and only consider donation for transplant. However, great medical advances can be made when families are willing to participate in organ and tissue donation for research.
Whole Body Donation for Research
Whole body donations are used for a number of research and education purposes. Although neonatal whole body donation is relatively new and the need for whole body donations is currently limited, it is still a very important option. A huge amount of information can be learned through a single donation. Factors which determine if a whole body donation can occur include the researchers’ current need, laws in your state, if organ/tissue donation of any type have taken place (some researchers need a completely intact body while other researchers allow for organ/tissue donation to take place before whole body donation), and minimum gestation age depending on research needs. Specified time-frames will need be followed surrounding when the gift takes place.
Once a whole body donation does occur, researchers will use the donation anywhere from one month to one year depending on the type of research. Currently with neonate donations, researchers are using gifts for about six months, but the time will vary with each case. Families need to take this into consideration before consenting to donation. Once the researcher is finished, a cremation will take place. The family will be notified that the research is complete. At that time the family may request to receive their loved one’s ashes back, or they can have their loved one’s ashes respectfully laid to rest by the organization who established donation.
Blood/Skin Samples for Donation
If you want to give back to the scientific/medical community in a less invasive way, depending on your child’s diagnosis, you may be able to participate in a research study where blood samples or skin biopsies are needed. If you are interested in this option, you can see if there are any current clinical trials or research studies taking place by going to http://www.clinicaltrials.gov/ct2/home.
Currently Duke University has an ongoing anencephaly research study. This study includes sending blood samples from both parents, and cord blood from the baby with anencephaly. You can learn more by clicking here.
Birth Defects Research Registry
Another way to participate in research in a less invasive way is by filling out an online survey for Birth Defect Research for Children, Inc. (BDRC), a non-profit organization with the goal of finding environmental factors leading to a variety of birth defects in the United States. BDRC has created the national Birth Defects Registry and have already found links/environmental factors to several birth defects and want to continue finding links to prevent birth defects in the future. You can learn more by going to http://www.birthdefects.org/registry/.
Other Information
With all donations, it is important to realize that pre-determined timetables will need to be followed. Once your child has passed away, a recovery surgery needs to happen quickly to allow for organs and tissue to be usable. This is true for donations for transplant as well as donations for research. When donating for research, often there is a bigger time window allotted before recovery must take place after time of death has been established. For instance, typically the recovery window for transplant donation is one to eight hours while the recovery window for research is one to twelve hours. Check with your OPO for required times for your specific situation.
After your child has gone through the organ and tissue recovery process, you may opt for your child to return to you so you may continue making memories with your child and spend as much precious time with your sweet one as possible. Or, if you prefer, you may arrange for your child to be transported to a local funeral home after recovery surgery has taken place. It is important to note that your child’s physical characteristics will change some during the recovery surgery. There will be changes in body temperature, color, and weight. Many families opt to have their baby returned to them after the recovery is finished and are very thankful for the continued bonding time.
It is important to remember that there are a lot of variables involved with a donation and no “promises” can be made to ensure donation will happen. However, it is also important to know that there are currently more options than ever before in the world of neonatal organ donation, so stay positive. Do not get discouraged as you pursue and research options surrounding donation. The process of researching options can bring healing even if a donation does not occur in the end.