It’s only been a year, but Adeline Rollins is almost twice the girl she used to be.
“She’s up to 33 pounds now,” said Adeline’s mom, Margaret Rollins. “She’s at about the average weight for a 2-year-old.”
That’s a far cry from where Adeline was on Feb. 20, 2018, the day she received a life-saving liver transplant from her mom at Emory University Hospital’s Children’s Healthcare facility in Atlanta after the child was diagnosed with a rare form of liver disease called biliary atresia.
On the day of her surgery, Adeline weighed just 19 pounds. So swollen was the diseased liver the surgeons removed that she weighed just 17 pounds after surgery.
“Her liver was so swollen. She was like a ball with little arms and legs sticking out,” recalled Margaret, who defied the odds by being a donor match. Parents generally have a 1-in-4 chance of being a match.
The effects of the disease went far beyond Adeline’s appearance.
“She couldn’t walk. She had never pulled herself up to stand,” Margaret said. “So much of her weight was in her core that she had no muscle development. She slept 20 hours a day. Her body was shutting down to preserve enough energy to keep her brain and heart going.”
Amy Robertson, a nurse practitioner at Allegro Clinic in Columbus, was the first to suspect Adeline was seriously ill when she showed up at the clinic at just six days old in December 2016.
That first visit has evolved into a close relationship between Robertson and the Rollins family.
“That first year, I never saw her smile and never heard her do anything but cry,” Robertson said. “She was very, very sick. We honestly didn’t know if she would survive.”
Now, more than two years after that first clinic visit and approaching the year anniversary of her liver transplant, Adeline’s progress is nothing short or remarkable.
“She walks. She runs, jumps on the couch, jumps off the ottoman,” Margaret said. “She’s a typical 2-year-old. Her body seems to love mom’s liver.”
Not entirely out of the woods
When Adeline returns to Atlanta for her one-year checkup, she expects to have her medication reduced to a single pill, down from the seven pills she took immediately after surgery.
Over the past year, her check-ups have gone from one a week to once monthly. She will soon have check-ups just once every three months. Likewise, her lab testing has gone from weekly to biweekly to monthly.
Oh, and one more thing.
“She eats like a grown man,” Margaret said. “It’s amazing how much that child eats.”
All of that doesn’t mean Adeline has completely recovered or is out of danger entirely, however.
“She’s in the normal range growth-wise and cognitively now,” Margaret said. “But she’s still behind a little verbally.”
There’s a bigger worry, still.
“The concern is that if she gets sick, as her immune system ramps up to fight the virus it could try to reject my liver,” Margaret said.
As a result, Margaret quit her job as an art teacher at Caledonia Elementary School to be a stay-at-home mom. Walker, the Rollins’ 3-1/2-year-old son, is in preschool.
“We keep her at home most of the time to limit her exposure to other children and other environments, especially now when it’s cold and flu season,” Margaret said of Adeline.
Becoming an advocate
By her own admission, Margaret is not the stay-at-home-mom type. Since Adeline is, for the most part, a typical toddler, Margaret has had to find ways to occupy her own time.
She’s become a resource for other moms who have children with liver disease and an advocate for organ donor-ship.
“It’s a pretty small community,” Margaret said. “So I think I can really help people who are going on this journey that I’ve been through. I can tell them about our experiences, answer questions or just listen.”
Adeline’s journey has naturally shifted the family’s perspective.
“It’s made my husband and I better people,” Margaret said. “We don’t worry about small things, the stuff people worry about. They don’t realize what a privilege it is to be able to worry about those things.
“Now, when I see Adeline just eating mac-and-cheese, it almost brings tears to my eyes,” she added. “This was a child that, just a year ago, cried when you tried to put anything anywhere close to her mouth.”
For Robertson, who can’t go more than a week without seeing her “favorite patient” and talks to Margaret three to four times a week, the transformation has been nothing short of joyful.
“She has made leaps and bounds,” Robertson said. “We’ve had some little mountains to climb, just regular childhood illnesses and she’s had one hospital admission recently just for IV antibiotics. But overall, she’s doing so good. I just love seeing the personality in her beginning to emerge. She’s such a happy little girl and that smile on her face, it brings such joy to my heart.”
Margaret calls Robertson her “special angel,” but Robertson said there is only one payment she expects in return for the devotion she has shown Adeline.
“I want to be a bridesmaid in Adeline’s wedding,” Robertson said. “I’m going to be really old by that time. I’m old now.
“Maybe I’ll just serve the cake,” she added.
Slim Smith is a columnist and feature writer for The Dispatch. His email address is [email protected].
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