9 minute read
Through Tribulations and Triumphs, an Author Finds a Voice and a Cause
There was nothing unusual about Peachtree Corners resident Analy Navarro’s pregnancy. Like most first-time parents, she and her husband José looked forward to welcoming a baby, showering her with love and affection and nurturing her to grow up healthy and strong.
But something was amiss. Shortly after little Julia was born, she developed jaundice, a common newborn affliction reflecting high levels of bilirubin, a substance in bile, which is a liquid in the liver that assists digestion. Jaundice often goes away on its own or is easily cured with UV light treatment. It is especially common among Asians and Latinos.
The jaundice cleared up but only temporarily. While breastfeeding, Navarro noticed Julia didn’t appear to be growing normally and had a green-olive tan, although both she and her husband are fair-skinned.
Delayed diagnosis
Near panic, Navarro took the four-month-old to Children’s Healthcare of Atlanta (CHOA) in Duluth, and subsequently to Egleston Children’s Hospital, where extensive testing revealed she had biliary atresia. The condition affects one in roughly 10,000 babies born in the U.S. and it’s the most common cause
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By Ellen Berman Photos by Tracey Rice
Above, Analy Navarro, mother and author of “Mighty Me,” with her daughter Julia.
for liver transplants in children, according to data from the Children’s Hospital of Pittsburg.
Usually, the disease is diagnosed by age four weeks, when surgery, called the Kasai procedure, removes damaged bile ducts and replaces them with a small piece of the patient’s small intestine. The procedure is often successful, but the older the patient, the less likely it will work. At age four months,
tiny Julia faced a mere 25% chance of success with Kasai surgery.
Julia needed a liver transplant. Otherwise, she would not survive.
That Julia was at CHOA was fortuitous, because the hospital has a biliary atresia research program staffed by some of the most respected pediatric hepatologists and gastroenterologists in America. So, the Navarro family had an entire team of medical specialists educating them on options who were also skilled at treating the condition.
The doctors said a new liver could come from either a living or deceased donor and the CHOA facility happens to be one of the few in the U.S. that performs living donor transplants on very young patients. The tricky question was how long Julia might survive before a transplant became critical.
There is a finite window when a patient is medically ready for a transplant procedure. They have to be just well enough to be able to survive the transplant procedure, but sick enough to seriously need the new organ. Diagnosed in December, by January Julia was on a waiting list for a liver. By March the doctors were still monitoring her health and she zoomed to the top of the list as a transplant prospect.
The waiting would tear at the heartstrings of any parent, but Navarro and her husband remained optimistic even when Julia was so sick she required hospitalization.
“We kept picturing the moment, when ‘the call’ would come for an available liver. But when no liver came in, we decided I would get tested to see if I’d be a match for her. You have to be in optimal health, have the right blood type, and the liver has to have the right anatomy and size for a portion of it to fit in the recipient in order to be successful.”
Mom’s a perfect match
After three days of intense testing involving giving more than 15 tubes of blood for analysis and meeting with an oncologist, cardiologist, hepatologist and other specialists, Navarro was deemed a perfect match. That was on a Thursday. At 5 a.m. the next
Monday, she was prepping for the eight-hour transplant procedure. A segment of her liver’s left lobe would be extracted to donate to her daughter, who would endure a 10-hour surgery.
Navarro insists that her husband took the brunt of this overwhelmingly challenging set of circumstances. Halfway through Navarro’s procedure, he raced over to be near his wife when her surgery started. Fortunately, the Emory Hospital was across the street from CHOA, creating a much-welcomed convenience.
Above, Analy Navarro and her family — husband Jose, younger sister Elena and Julia.
A book is born
During mom’s and daughter’s recoveries (it takes about a year for the liver to regenerate), Navarro wanted Julia to know how strong and mighty she is — that a small portion of mom was in her belly.
“I started telling her stories so she could understand what she has been through, and I wanted her to feel empowered and own her story,” explained Navarro. “I couldn’t find a book she could see herself in, even though she’s not the only child having a transplant with parents who are having these discussions.”
Thus inspired, Navarro, an avid reader with a knack for writing, typed up a story in one day that filled that gap.
“Children are so smart. We underestimate them. We spoon-feed them info about medical conditions, but we need to allow them to see these situations in an adult way so they feel confident talking about it. To them it is normalized. I wanted to open that dialogue between myself and Julia in a child-friendly way,” Navarro said.
Navarro’s message resonated with other transplant parents who were struggling to adequately explain similar situations to their own children and share them with their friends and classmates. She found an illustrator who loved the story and was able to perfectly encapsulate the uniquely fanciful imagery of the scenes and characters that Navarro envisioned.
Since the summer of 2021, nearly 1,000 self-published copies of “Mighty Me: A Magical Journey of Courage, Love, and Strength” have been sold. Parents have reached out to her from as far away as France, Portugal, Brazil and Australia. The book has also been translated into Spanish.
By this time, Navarro had become an outspoken advocate for transplants and active in the biliary atresia transplant community. She wasn’t surprised at its success. Yet, the book doesn’t mention an organ or liver; rather, it depicts a little girl’s journey to save her own life.
“The book allows a child to see their journey as an adventure, that life is composed of all kinds of experiences, not necessarily negative or positive,” Navarro explained. “My intention is for children to own their story: not seeing it as sad or tragic but as an experience to overcome and to be at peace with it. I want them to see themselves as hero or heroine of their own journey.”
Martine Borst, who became a living donor when her son was five months old, appreciated the book’s non-medical approach to the transplant journey. She viewed its theme as universal.
“There are other books that talk
about biliary atresia and transplants that are medically oriented. This one is about a quest and saving a life. My son is a year-and-ahalf old now and loves the magical paintings.”
Borst contacted Analy from the Netherlands to attain multiple copies of the book to share with her parents and in-laws and donate to a local hospital. She has also read the book to neighborhood children.
Spreading knowledge and understanding
While Navarro’s personal medical journey had a happy ending, the reality is that many children pass away while awaiting a transplant or don’t survive transplant surgery. More than 106,000 people are on the national transplant waiting list, yet in 2020 just over 39,000 transplants were performed from living and deceased donors, according to the Health Resources & Services Administration, a federal government department that provides information about organ transplants.
The sadder outcome is something Navarro intends to convey in her second book, which she is working on now.
“We need to help small children, their friends and cousins, face the grieving they are going through, so I decided to open the dialogue in a child-friendly way so they could process it and talk about their feelings,” she said.
Navarro also has a third book in the works.
Four-year-old Julia often accompanies her mom at book signings, enthusiastically praising her as “the best writer in the world” and “my favorite author.” She aspires to become a scientist one day. Meanwhile, her family joyfully celebrates her birthday every March 26, the day of her “rebirth” in 2018 as a transplant recipient.
As Navarro embraces her new life as an author and mother of two toddlers, she continues to be active in fundraising for the Biliary Atresia Research Program at Children’s Healthcare of Atlanta. For more information, visit give. choa.org.
Navarro’s book, “Mighty Me,” is available on Amazon and can also be purchased at the Barnes & Noble bookstore at The Forum shopping center. ■
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