Many of our regular readers will remember Sofie, liver recipient, and her mom, Melissa. In fact, our first 5k was started by Sofie’s family in her honor. This fall, we’ll be running the 7th Annual Donate Life NC Hero Run! (Sign up here.)
We thought it would be a great way to celebrate National Pediatric Transplant Week to reconnect and catch up with Melissa and our favorite superhero, Sofie.
Howdy, Melissa! Thank you for joining us today and sharing your family’s transplant journey with your daughter Sofie. We know Sofie had a liver transplant when she was a baby. When and how did you learn you would need a transplant?
We knew Sofie needed a transplant at just 4 months old, she had biliary atresia and her liver failed when she was just an infant. She was placed on the transplant waiting list the day after our first appointment with the Duke Pediatric Transplant team. Her condition worsened very quickly and they felt she needed to be listed immediately.
We had a wonderful support system. Our boys were just 4 and 6 at the time, my parents had just recently retired and stayed with them for 6 weeks during our stay at Duke. My husband worked at home during the time, we alternated our time in a hotel so one of us could be by her side at all times. My in-laws brought us supplies and gave my parents breaks when they needed to go home, and they were the best at putting us on prayer lists! My sisters-in-law helped so much, one would come with me to all appointments during the first year post transplant. MeFine gave us donations of gift cards, friends held fundraisers to offset hotel and food costs which was a huge blessing.
At one point we were looking for a living donor and we had 35 people step up to volunteer! What an amazing gift!
What helped you out during your difficult moments of your transplant journey?
Prayer and Faith. Our friends and family. After surgery, we had meals delivered for over 6 weeks! Our preschool was so helpful, they brought my son out to the car so I wouldn't have to expose Sofie to germs.
We also were eligible for a home health care nurse, they took the night shift for almost 8 months! Sofie came home on 16 different medicines, 2 shots per day and a feeding tube. We could not have survived without that.
Our transplant team at Duke was absolutely amazing, to this day, nearly 9 years later, we have the same transplant coordinator. He is a true gift and answers every single one of my concerns within minutes of our text, no matter how crazy my question may be. He has been an absolute blessing to our family and has helped us to learn how to live a normal life! Gently encouraging us when we were afraid to do so, helping us during every step of the way.
Do you remember the day you learned you’d receive your transplant? What was “the call” like?
We had received a handful of false alarms, once we received the call, we knew it was itl. At first we were so excited, then scared. Then relieved. It's such an odd feeling to know that someone has given you this gift of life, the greatest gift to receive, in their passing. When you get over the excitement, fear and relief, that reality becomes your main focus. There truly is no greater gift than the gift of life.
How has your life changed since you received your transplant?
Although we have had to altar many things about how we live, it is mostly normal. Sofie’s doctor appointments are only 2 times per year with 2 lab visits in between. Her school is very accommodating to her health care plan and friends and family truly understand our need to be a little more careful. Although there is always a little fear surrounding transplant, we do our best to take that fear away from Sofie and treat her as normally as we can. (Pandemic aside!)
What would you like people to know about what it’s like for an individual or a family to go through an event like this?
I was told our journey would be a roller coaster, there is so much truth to this statement. During the 'eye of the storm' I was also told that one day life would be pretty normal and I couldn't see that light at the end of the tunnel. Today, (minus the pandemic) life indeed is very normal. Sofie has been blessed with good health and she leads a very normal life!
Although Sofie is still young, she turned 9 on March 30. From day one she has lived each day to the fullest. She has truly earned the name ‘Super Sofie’ and has been brave and strong through her journey. She's proud of her scars and I will always encourage her to be. Although we refer to her donor as her angel as she's still very young to fully understand the process, when she is ready we will make sure she knows that she was truly given this gift of life. We never heard back from our donor family, though I hope this family and every donor family understands that organ donation saved her life.
Sofie was given this gift and she is living it to the fullest. She loves nature, the beach, exploring and Legos! She rarely complains, even though for nearly one year of the pandemic, she went without seeing friends. She never missed a beat and learned how to entertain and educate herself. She's living her life to the fullest and we will be there for every step of the way to make sure she continues to appreciate this second chance of life.
Thank you to Melissa for catching us up and sharing Sofie’s story!
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April is National Donate Life Month. To celebrate, Donate Life NC, in collaboration with LifeShare Carolinas and Carolina Donor Services, is launching Growing Together NC (#growingtogether). This campaign will focus on all the ways we can continue to grow together as a community, while highlighting the extraordinary and life-changing effects of organ, eye and tissue donation.
This month, we’ll feature stories from North Carolinians whose lives have been touched by donation and transplant. We’ll meet donor family members, pediatric recipients, living donors, DMV examiners who “ask the question” every day, and healthcare professionals who want to inspire others to join our community. Each story reflects some of the trials of donation and transplant, as well as the highlights of recovery. We hope that everyone will be inspired by meeting people whose lives have been impacted by donation, and for anyone not yet registered, they will help illustrate the life-saving miracle that donation can be. Together, we can grow the donor registry.
