This time of year typically means friends and families gather more for meals and holiday outings. During those times of fellowship and reflection, important conversations are likely to surface, and there is no topic more necessary than understanding the facts about organ donation.
We learned about our unborn daughter’s diagnosis of Tricuspid Atresia and Common AV Canal during my pregnancy with her, and although she wasn’t even born yet, we prepared to fight for her life. Her heart didn’t form normally during gestation, and upon birth, it would struggle to bring oxygen-rich blood to her body.
Prior to this discovery, my husband and I didn’t dedicate much thought to organ donation until the necessity of it beat within the back of our minds like an unrelenting drum, as we waited to see what life would look like with our medically fragile daughter.
At just 10 months old, after various palliative surgeries and inpatient stays, our daughter Chloe was declared in heart failure, and we joined the list of hundreds of Kentuckians waiting for a life-saving organ transplant, which would save our baby girl. Months later, we received the phone call that a perfectly matched heart had become available. The next day, she received her heart, as well as a second chance at life.
Knowing that your best day is another family’s worst is a harrowing truth to sit with; however, each morning, we’re reminded that if Chloe’s donor family had believed the misinformation and fear surrounding organ donation, Chloe may not be with us today. As loved ones gather this season, we’re more aware than ever what it means to give and receive the ultimate gift. Organ failure, or the need for a life-saving transplant, does not discriminate; in fact, 13 people die each day waiting for their gift of life. Inflammatory headlines and misinformation tarnish the sanctity of the organ donation process, which threatens to increase that number by discouraging people from joining the registry.
Organ donation and transplantation in the United States is an intensely regulated field of medicine, guided by federal laws and ethical oversight. Organs are only recovered when a patient is legally declared dead, which is a decision made by independent medical teams, separate from transplant specialists and procurement agencies. Only about 0.3% of deaths occur in a way that allows someone to become an organ donor, and clickbait headlines and misinformation create devastating roadblocks to this already rare and miraculous life-saving care.
While no system is perfect, the donation process is built on strict standards of care and continuous review. Organ procurement agencies continually undergo rigorous process improvement initiatives in line with their ongoing commitment to recipients and donors. There are stop processes, checks and balances and strict guidelines in place to prevent errors, with the specific intention of saving donor lives.
In Kentucky alone, more than 1,000 people are waiting for a life-saving organ transplant, and only about 64% of eligible residents are registered donors. By understanding the facts about organ donation, such as who can donate, how the process works and how many lives can be saved, communities can make informed and empowered decisions, rather than acting out of fear.
This season, as you gather with loved ones, take a moment to fact-check your own understanding and talk to your friends and family about organ donation … it could save a life like Chloe’s.
Mackenzie Ellis Clark lives in Louisville and is a mother of an organ recipient. Her daughter received her treatment and organ donation at Norton’s Hospital in Louisville.
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To learn more about organ donations, see Donate Life Kentucky.