In April of 2013, my fourth child, Avielle, was born. Only 30 hours after giving birth, I brought home my seemingly healthy newborn. During her first two weeks of life, she was fussy, inconsolable at times, excessively hungry, jaundiced, and not gaining weight.
When she passed white stool, I pleaded with her pediatricians to investigate further. They “humored” me with getting labs done. The next day, they called me with terrible news. I had spent the previous night Googling possible causes for her symptoms; now, my worst fear was confirmed. Something was wrong with her liver.
The pediatrician gently told me that Avielle’s total bilirubin, ALT, AST and GGT were very elevated. I remember saying back, “So something is wrong with her liver, and it’s probably biliary atresia.” The pediatrician responded by directing us to a nearby hospital for a GI appointment that she had already booked for us. I hung up the phone, and immediately collapsed to the floor, crying uncontrollably.
As I was lying there, consumed with pity for my daughter, myself, my husband, and my three other children, Avielle started to cry. At that moment, I found my strength: my inner voice scolded me for being so selfish, and yelled at me to stand up and fight for my daughter. As I cuddled and consoled her, I metaphorically put on my armor of faith, courage and knowledge and went to battle for her.
While my husband and I drove to the local hospital, we made plans to ask for a transfer to the best children’s hospital in the United States, Children’s Hospital of Philadelphia. My husband and I went into that GI appointment already knowledgeable about biliary atresia — what we strongly suspected would be her diagnosis — but having only read information we could find on the internet, we were not really prepared for what was in store for Avielle.
After five grueling days of testing, Avielle was officially diagnosed with biliary atresia. She had her first major surgery at only 4 weeks old; from that surgery on, it did not get any easier. She endured countless blood draws, numerous scopes to fix varices bleeding, was hospitalized frequently, and was slowly getting worse, right before our eyes.
Avielle was officially put on the list for a liver transplant at only 8 months old. When that happened, my husband and I decided that I would be tested right away as Avielle’s potential living-liver donor. I already knew that I was the same blood type as my daughter and had the correct build that the medical team desired in donor candidates. After one and a half months of thorough medical testing, I received the amazing news: I would have the honor and privilege of donating to my daughter.
Shortly after her first birthday, we were scheduled for the surgery. I spent the night before the surgery wide awake, memorizing her face, cuddling her, kissing her, and whispering in her ear that everything was going to be OK. I told her that she was strong, brave, and that she was going to make liver transplantation look easy.
The next morning, I cried as I had to leave to go to the hospital next door for my surgery. It was the first time I cried in front of her since the day we got the news that her labs were abnormal. I cried because I knew it was the last time I would get to see her for several days — and my deepest fear was that she might not make it through the surgery.
After saying goodbye to her, I found myself in an operating room in the adult hospital adjacent to the one my daughter was in. I remember the anesthesiologist asking me, as he was administering the epidural, if I were nervous about the surgery. I hesitated, and then responded, “Only for her, which is so strange, because I don’t feel any fear for myself.” He touched the top of my shoulder, and replied, “That is because you are a great mother.” I laughed, not knowing how to accept his compliment, and thought to myself, “It is because I can’t imagine living my life without her in it.”
I awoke from the surgery in a complete panic and begged the nurse for information about Avielle. She had none. I waited for what seemed like hours. Finally, the Living Donor Coordinator showed me a photograph of Avielle in her recovery room. She told me my liver was “beautiful,” and that Avielle was doing amazingly well. Hearing this news lifted a huge weight off my shoulders. We were going to be able to watch Avielle thrive and grow.
In May, we will celebrate five years of Avielle having her new liver.
To me, living liver donation is a gift, plain and simple. For us, it was the best option for Avielle. As far as the surgery itself goes, it was easier and less painful than getting my tonsils out when I was 27. For me, the only downside of being a living donor was not being able to lift more than 10 pounds for two months. Of course, the health and well-being of my daughter far outweigh any negative aspects of participating in living donation.
Through my journey with Avielle and the living liver donation, I have had the unique opportunity to truly grow as a human being. I’ve learned to treasure every moment on this earth, and I honestly believe that I can make a real difference in the world through simple acts of kindness and by spreading awareness about organ donation.
Julia Zerance is mom to four children, ranging in age from 6 to 11. Her youngest child, Avielle, was born with biliary atresia and received a live liver donation from Julia in May 2014.