Adeline Rollins, 14 months, faces a liver transplant Tuesday in Atlanta that could give her a chance at a normal life. Adeline was born with biliary atresia, a rare and serious disease, and her mother is donating a part of her liver to save her daughter's life. Photo by: Courtesy photo
Allegro Clinic nurse practitioner Amy Robertson, left, Adeline Rollins and her mother, Margaret Rollins, are pictured at the clinic. Robertson noticed something was severely wrong with Adeline during her first postnatal checkup and ordered the tests that produced the child's diagnosis.
Photo by: Courtesy photo/John Michael Rollins
February 17, 2018 9:57:03 PM
The contents of this article have been modified since its original posting.
Adeline Rollins was born on Dec. 6, 2016, at Baptist Memorial Hospital-Golden Triangle in Columbus.
But in a very real sense, life will begin for the little girl on Tuesday at Children's Healthcare of Atlanta.
"I've learned to never take a day for granted," said Margaret Rollins, Adeline's mom. "Every day she gets after Feb. 20 is going to be a blessing."
On Tuesday, Margaret will have surgery at Emory University Hospital to remove a section of the left lobe of her liver, which then will be delivered across the street the Children's Healthcare where surgeons will replace Adeline's badly-swollen, failing liver with her mom's donor liver.
"What they are telling me is that I'll feel worse after the surgery, but Adeline will feel better right away," Margaret said. "It will be the first time since she was born that she's had a liver that works."
After a week in the hospital following the six-to-eight-hour surgery, Margaret will go to the Ronald McDonald House in Atlanta for a month, making three visits a week to the hospital as part of her recovery.
And there is plenty of catching up to do for Adeline.
"She can have a normal life," Margret said, something that has evaded the child almost since her birth.
"Her liver is so large, most of her weight is in the center of her core," Margaret said. "She can't stand up. She can't walk. She can only scoot around on her bottom. She can't eat. She gets all of her food through a feeding tube. She sleeps a lot. On bad days, she sleeps probably 16 to 20 hours a day.
"Really, she can't do much of anything a child her age can do," she added. "Nothing is going to work until we get that old liver out."
'Something wasn't right'
Infants get sick. It's what they do.
Margaret and her husband, John, knew this by the time Adeline was born, having gone through some of the typical childhood illnesses with their son, Walker, who is 17 months older than Adeline.
But when Adeline was just six days old, Margaret noticed that Adeline's stools were pale as she changed her diapers.
Her family told her it was nothing to worry about.
But the "mom radar" in Margaret was strong.
"I knew in my gut something wasn't right," she said.
So she took her daughter to Allegro Clinic in Columbus, where nurse practitioner Amy Robertson first examined the child.
"The most frightening thing for me was the color of her stool," Robertson said. "I knew we had a case of serious, serious liver trouble."
A series of blood tests over the next two weeks needed to confirm Robertson's suspicions came back inconclusive. Robertson, realizing that Adeline was gravely ill, ordered one more test, and the technicians at Lab Corp rushed it through.
This time, the blood test provided the diagnosis. Robertson broke the news to Margaret on New Year's Eve: Adeline was suffering from a rare liver disease called biliary atresia.
"I've been working with children for nearly 11 years and never had patient with this disease," Robertson said. "Neither has the doctor I work with."
Robertson helped the Rollins find a specialist in Jackson, then in Birmingham, where -- when Adeline was six weeks old -- a surgeon took a portion of the child's small intestine to create a new bile duct. A symptom of biliary atresia is a damaged bile duct that causes bile to back up into the liver, essentially poisoning the child.
Since the surgery, Adeline has been put under anesthesia 11 times to allow fluids to be drained from her body.
Those efforts were stop-gap measures. Seventy-five percent of biliary atresia patients require a liver transplant before age 2. There is a waiting list for liver transplants. Some children die before a matching liver is available.
'Get better, not bitter'
When Adeline was born, in those first few days of normalcy before anyone realized the child was sick, Margaret and John already knew their hands would be full.
Margaret is an art teacher at Caledonia Elementary School. John works at Cadence Bank. Two working parents with two children under age 2 can be challenging even under normal circumstances.
"I have to be honest," Margaret said. "It's been really hard. We knew pretty early that it was going to be a really long road. It's really easy to think, 'Why us?' But since day one, our motto has been: Get better, not bitter."
The Rollins have had a lot of help. Grandparents on both sides of the family helped take care of Walker when Adeline's condition required her parents' undivided attention.
Margaret's fellow teachers have donated sick days to cover Margaret's frequent absences, providing enough sick days to keep Margaret on the school payroll through April.
Cadence Bank has been supportive, too, opening an account for donations that will be needed for the medical expenses that the family's health insurance will not cover. When Adeline was in Birmingham for surgery, the bank arranged for John to work out of its Birmingham office when he could.
"We've had so much support," Margaret said. "I call them my angels."
By that description, Robertson has been the Rollins' archangel.
She has been far more than a nurse, becoming a confidant and source of comfort for the family, especially Margaret.
"When you work with children, it's just different," Robertson said. "You see them when they are born, watch them grow up and learn new things. But Adeline is special. When you meet her so early in her little life and you know her load is so tough..."
Robertson paused for a moment, her voice choked with tears.
"I'm sorry," Robertson said. "But she's such a sweet, smiling child, even as sick as she is. When she comes in and sees me, I see the fear in her eyes. She knows I'm the one who is going to be pricking and prodding her.
"Adeline is like one of my own grandchildren," she added.
So much so that the parents of Robertson's biological grandson, Sawyer, 2, opted to forgo conventional gift -giving for his birthday party Saturday and help Adeline instead.
"Sawyer's mom and dad said Sawyer has all the toys he needs," Robertson said, her voice cracking again as she told Margaret. "So everybody (brought) donations for Adeline instead."
The scariest part
When it became clear that Adeline's survival relied on finding a donor liver, the odds turned in the Rollins' favor, for once.
"There was only a 25 percent chance I would be a match," Margaret said. "If I hadn't been a match, Adeline would have been put on a waiting list, so I'm very grateful. When all this is over, that's going to be my mission -- organ donations. Mississippi has the fourth lowest rate of organ donations in the country."
In these few days leading up to the transplant, Margaret fights to remain optimistic.
As she thinks about Tuesday, there is an internal battle being waged between fear and hope -- better or bitter.
"If it all goes perfect, she'll have a normal life," Margaret said. "She'll be on medication the rest of her life and both of us will always have a pre-existing condition, which concerns me because of what's going on with health care right now.
"But still, I'm looking forward to so much," Margaret added. "She's going to need extensive therapy. She'll have to learn how to eat food, how to crawl and walk, just about everything. And every little thing she does will be a celebration. That's the gift. That's what I try to focus on."
There is something else Margaret tries not to focus on.
One in four children do not survive the liver transplant surgery, a fact that understandably haunts Margaret.
"It's all been pretty scary," she said softly, as the tears began to come. "I think the scariest part will be telling her goodbye on Monday night. I'll be handing her over for major surgery to have a major organ removed. Transplants are never guaranteed.
"The thing I'm most scared of is waking up from surgery and them telling me she didn't make it."
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To become an organ donor, go to: www.organdonor.gov
Donations to help the Rollins with medical expenses can be made at Cadence Bank in Columbus.
Slim Smith is a columnist and feature writer for The Dispatch. His email address is [email protected]
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