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.
My name is Holly, we have lived in Mount Airy for the past 16 years. My daughter Juniper was born in September of 2019. When she was almost two months old, we realized she was sick. After many tests, she was diagnosed with Biliary Atresia. She had no gallbladder or common bile duct, so her liver wasn’t able to drain and expel the bile it created.
At 10 weeks old, Juniper had a surgery known as a Kasai procedure to hopefully help drain some of her bile out of her liver. This procedure isn't always effective, though. She improved some after that surgery, but they wanted us to go ahead and be seen with the hepatologists and transplant team at Duke. Her first appointment was at the end of December. Then in January 2020, she started developing a lot of ascites (excess abdominal fluid) and she was very jaundiced. Her team at Duke decided she needed to go ahead and be evaluated for transplant as soon as possible.
Juniper was in in-patient care at Duke Children’s Hospital while we waited. She was placed on the UNOS transplant list on February 18, 2020. On the morning of March 4th, 2020, when the pediatric liver transplant team rounded, her doctor came over to tell me she had good news. She said they'd identified an altruistic living donor who was a great match to Juniper, and that they'd tentatively reserved operating rooms for Friday, March 6th. I immediately started crying, and my first thought was "I know nothing about this person, but I know for sure that I love them."
On March 6, just before she turned 6 months old, Juniper received a portion of an unrelated, altruistic donor’s liver. Since her transplant, she is thriving, and just celebrated one year with her new healthy liver!
Before Juniper was listed for transplant, she had been sick her whole little life. Even before we knew she had biliary atresia, she didn't have the best health. But from the time she was listed, we had hope. We knew that the hospital and her doctors were going to make sure she stayed healthy enough to receive her transplant and that she got the liver she needed.
During the entire time she was listed, she was hospitalized, so our whole life was different. Our families and friends and our church were there to support us as much as possible. We also had a lot of support from the hospital through our transplant coordinator and social worker, as well as her awesome doctors and nurses.
Juniper has done so well since receiving her transplant. She is growing and thriving, and continues to catch up with her milestones. With the reality of COVID-19 being a threat, we've basically been hermits since she was discharged. Even a small sickness like a stomach bug can wreak havoc on her body due to having a suppressed immune system. We've hit a few minor bumps in the recovery road, but she is a healthy, happy, and growing 18 month old now! We also have a new "family" in our living donor and his wife and child. We haven't been able to meet in person due to the pandemic, but we've spoken and exchanged messages and gifts since we were connected through Duke's living organ donor program. We look forward to actually getting to meet in person when it is safe, and they will always be very special to us.
Having a child in need of an organ transplant is the scariest thing I have ever experienced. It is a terrifying, isolating, and exhausting experience. But you are not alone. There are many other families out there who are on some leg of their transplant journey, and many of us are happy to cry, commiserate, laugh, celebrate and mourn with you in any way you need. No two stories are ever the same, but there is always someone who can offer an empathetic ear or shoulder to cry on.
Ensure that you're an organ donor! Talk with your family about your wishes and register your decision. Don't wait, do it now.
To learn more about Juniper and her transplant journey https://www.facebook.com/junipersjourneywithba/