The ultimate gift: Transforming lives through organ and tissue donation
By Jacob Sintzel, Intern, Strategic Communications
Each year 1,600 Canadians are added to the transplant waiting list. While conversations about organ donation can be difficult, living life with the uncertainty of not knowing if you will receive a new organ is even harder. All it takes is one organ donor to save up to eight lives and improve the lives of 75 people.
In recognition of National Organ and Tissue Donation Awareness Week from April 24 to 29, we are doing our part to emphasize the importance of organ and tissue donation.
Emily Ghent, a Social Worker in the Liver Transplant Program at SickKids, has witnessed just how life-changing organ transplantation can be for her patients and their families. We sat down with Emily to learn more about her role within the Liver Transplant Program and her experiences over the years working with organ recipients and their families.
What are your main responsibilities as a social worker with the Liver Transplant program? What help do you give to those going through the transplant process?
As a social worker for the Liver Transplant team, I am dedicated to promoting the psychosocial well-being of children/adolescents and their families who are referred to our program. Our patients come from all over Canada and over half of our transplants are through living donors. Families experience multiple emotional and practical challenges including processing the impact of having a child with end-stage organ failure or a serious metabolic condition, family separation, caring for other children, and the financial impact of time away from work and added costs associated with hospitalization.
Often times, a parent can be a living donor as well so families will have two people having surgeries on the same day. Patients and families receive social work support from the pre-transplant assessment through the hospitalization period and in the post-transplant period. While support is tailored to the individual needs of each child and family, clinical interventions may include: identification of what strengths and resources children and families bring to the experience and what information and supports are going to be needed to help them through their journey; counseling around their feelings of needing an organ transplant and help with incorporating this into their identities; awareness of social determinants of health and referral to, and advocacy and collaboration with community services to ensure practical needs of families are met; assistance with school reintegration; support around the importance of self-care including adherence with daily medication; and helping with successful transition to adult care.
I believe that when a child needs an organ transplant, it affects everyone in the family and I work with team members to ensure that patients, siblings, and parents have the information, support and resources that will help them through the experience.
What are the most important lessons you’ve learned in this role?
I’ve been impacted by the immense generosity of people who are going through the most difficult time of their life, yet make a decision to help others through consenting to organ donation. I’ve witnessed the incredible kindness and generosity of living donors who may be parents, relatives, friends, neighbours, or anonymous people who are willing to undergo a major surgery and the subsequent physical, emotional, and financial impact to help a child. I have seen the transformative power of receiving an organ transplant and have learned that children, adolescents and their families are incredibly resilient. I have learned that when you have been given a gift like an organ, there are no words in the human language that can express the immense gratitude of parents and recipients when they are trying to say thank you.
What are the most difficult and rewarding parts of this position?
The hardest part of my position is knowing what these children and adolescents need to get better, and watching them suffer during the waiting period or tragically die waiting for an organ. With organ transplantation, we know what we need to make these kids better, but we have to wait while they suffer and get worse, despite our best efforts to keep them in the best health possible. That agonizing time of witnessing the suffering while knowing what is needed to help them get better is the hardest part for me.
The most rewarding part of the job is seeing the kids be kids and just be who they are. They get the opportunity to have a childhood and get to grow up. Now that I have been part of the Liver Transplant Program for so many years, I’m able to see the long-term benefits of organ donation. The babies that I worked with when I first started here, who were admitted for months and were very sick, are now going into middle school. You would never even know that many of them had a transplant. When the teens I have worked with come back and say hi and they’re attending university or they’re starting employment, it feels wonderful. It is not just to see the patient recover, but it is about seeing the parents get to enjoy their children without having to hold on to so much fear and uncertainty.
All parents have worries, but when your child has a life-threatening condition and is in need of a transplant, understandably, those fears become heightened. So when you get to see these parents relax and enjoy their time with their children, it’s a wonderful part of this position. I am also privileged to work with a phenomenal multidisciplinary team that has a strong focus on the quality of life of each patient and family, that consistently goes the extra mile and that cares for and supports each other.
What do you do to advocate for organ donation?
I’m very proud to be involved in Transplant Centre initiative run in collaboration with Toronto General Hospital's Multi Organ Transplant Program, St. Michael’s Hospital, and the Trillium Gift of Life Network (TGLN) called the High School Outreach Initiative. Members of the healthcare team give presentations at high schools in the GTA with the transplant recipients/advocates to talk about the importance of transplantation and organ donation. This initiative started in 2011 and between 2011 and 2017 we have given 363 presentations, reaching 15,176 students. Our hope is that these students talk to their friends and family about what they learn so that the impact can be far reaching with the result of an increase in the number of people who register their consent to be organ donors. Feedback from schools and students has been very positive and providing students with real life examples that help them see firsthand how organ donation can save and transform a child or adolescent’s life makes the issue real for these students.
I am also part of an incredible group of volunteers that has founded Camp Kivita, an independent charity since 2013, which provides a one week summer camp experience for children living with end-stage organ failure or those who have received a transplant. Since our inception eight years ago, Camp Kivita has provided 65 children, ages 7-18 years of age, the opportunity to participate in traditional summer camp experience. When you see children and teens kayaking, swimming, climbing rock walls, participating in talent shows and most importantly making new friends and forming deep bonds it’s hard not to be in awe of the difference organ donation has made in their lives. Part of our mandate is to promote organ donation and transplantation, and through Camp Kivita, we demonstrate that these kids can live wonderful, high-quality lives and that organ donation works!
In my personal life, I try to be an advocate for registering consent to be an organ donor by sharing my experiences of caring for children and families who are waiting for organs, as well as celebrating those who received the gift of life and now have the opportunity to move forward with their lives and fulfill their hopes and dreams. These conversations are often a good opportunity to educate people and to clarify any misinformation about organ donation.
What would you like people to take away from National Organ and Tissue Donation Awareness Week?
I always hope that no one ever has a loved one that needs a transplant and that people are never in a position where they are approached about the possibility of donating an organ due to a tragic life circumstance. However, I hear the words, “I never thought this would happen to me,” on a daily basis. Recognizing the inherent uncertainty of life, what I would like people to take away from Nation Organ & Tissue Donation Awareness week is the importance of educating oneself and taking the time to speak with your family about your wishes. While organ donation can be a difficult conversation, transplantation is transformative for these kids and their families and for that reason I strongly recommend that you register your consent at beadonor.ca.
The Trillium Gift of Life Network (TGLN) is a not-for-profit agency with the Government of Ontario that assists in the coordination of organ and tissue donations and oversees the process of matching organs with patients. TGLN also has public education programs and resources, which can be found on their website. Their green awareness ribbon is always a good conversation starter and during a time like National Organ and Tissue Donation Awareness Week, it is a great opportunity to bring up the topic in an informal way.
What advice would you give to someone undecided about registering to be an organ donor?
One thing I would have them think about is what decision would you hope someone else would make if you or a loved one was in need of an organ? Organ donation is a gift that lasts a lifetime and one organ donor can save up to eight lives.
To register, check or update your consent for organ and tissue donation, please visit beadonor.ca. By registering, you are ensuring your decision to donate is recorded by the Ministry of Health and Long-Term Care and is accessible even when your donor card is not readily available.