Supported Research

Supervisor(s):  Kimberley Widger

Lay Abstract

Background: Infants who die do not donate their organs very often. Many infants need small organ transplants, which could be donated by other infants. Infants can most commonly donate their organs after life support is removed. To donate organs after removing life support, the infant must die within one hour after removing life support. To increase rates of newborn organ donation, we can identify which newborns are likely to die within one hour after removing life support. Healthcare providers who care for sick infants rarely raise the possibility of organ donation with parents of infants who are likely to die. Talking to parents to discover what is important to them in conversations about infant organ donation is important to teach healthcare providers how to have these difficult conversations. Purpose: This research has three main goals. 1) Gather existing information about infant organ donation. 2) Build a statistical model that can predict how long it will take for infants to die after removing life support. 3) Find out what is important to parents when discussing infant organ donation with health care providers. Methods: Study 1: I will search through research studies and other publicly available information to try to find all information about infants donating their organs after the removal of life support. I will collect and summarize this information to understand what is already known about infants donating their organs after the removal of life support. Study 2: Using data from the medical records of infants who have already died, I will build a statistical model that can predict how long it will take for infants to die after life support is removed. A statistical model uses math to make predictions. A model that can predict how long it might take an infant to die can provide families with information about whether their infant is likely to be able to donate their organs after death. Similar models have been made for adults and children, so information from those models will be used to guide this research. Study 3: I will interview parents of infants who have died to find out what would have been important to them in a conversation about infant organ donation. I will interview parents who have had a child less than one year pass away in hospital, after choosing to remove life support. We will look at the information we find in these interviews and look for similarities and differences in the opinions of parents. We will use the information we find to develop guidelines for communicating well with parents of infants about organ donation. Anticipated outcomes: From study 1, we expect to have an understanding of all of the publicly available information about infant organ donation after removal of life support. From study 2, we expect to develop a statistical model that can accurately predict which infants are more likely to die within one hour after removing life support. From study 3, we expect to better understand how to communicate well with parents of infants about organ donation. Patient engagement: I will engage one or two patient partners. These partners will be parents of an infant who has died, who are interested in supporting this research project. They will help me with developing interview guides, recruitment materials, and planning for all studies, but especially study 3. Relevance to patients/community: This study could increase the availability of small organs for transplant by increasing rates of infant organ donation. This study could improve the experience of infant organ donation for donor families by helping medical professionals to communicate well, and by giving donor families more information about if their infant is likely to successfully donate organs. Conclusion: Infants rarely donate their organs, despite the fact that many children in Canada are waiting for small organs that can be donated by infant donors. Two barriers to infant organ donation are that it is unpredictable which infants will die within an hour after removing life support, and that communicating with families about infant organ donation is challenging. This study hopes to increase rates of infant organ donation by improving these barriers.