Adeline was only three days old when her mom, Margaret Rollins, realized that something was wrong.
“The color of her stool was off, and since I had an older child, I knew something wasn’t right,” Margaret explains to Babble.
When she shared her concerns with her husband and close family, everyone assured her that she was overanalyzing things, and Adeline was just fine.
But mother’s intuition told her otherwise. Margaret just couldn’t ignore the nagging feeling that something serious might be wrong with her baby.
“I began to Google her symptoms, and the same things kept coming up each time, all leading to a potentially fatal liver disease called biliary atresia,” Margaret recalls. “I was in shock reading about this disease. But my husband is a statistics man and he assured me that the odds were in our favor that she was fine, and also, it just would not make sense if she had it. Not our daughter, never would something so serious affect us.”
After putting in a call to their pediatric nurse practitioner — just to put their minds at ease — and making several trips to the hospital for bloodwork, the nurse called.
“When she started speaking, her voice cracked, and I knew right then what the results had shown,” Margaret remembers. “She asked us where we were, and if she could come speak with us in person.”
Thirty minutes later, she was with the Rollins family, explaining that Adeline most likely did have biliary atresia; a condition in which the liver’s bile ducts are blocked or damaged, causing bile to build up in the liver and cause organ failure.
“She was 2 1/2 weeks old at the time,” Margaret says, “and all I remember was the air leaving my lungs like I had been punched in the gut, and I hit the floor sobbing. I’d never felt greater pain in my entire life. I remember laying in bed later that evening and telling my husband, ‘I just need her to live. Whatever we have to do, my baby cannot die.’ He promised me we would do everything in our power to save her. We spent the next few days crying and absorbing the severity of the situation, before picking ourselves up off the floor, and beginning the fight to save our daughter’s life.”
Adeline was six weeks old when she underwent the Kasai procedure — a surgery which used her own intestines to compensate for the damaged ducts and drain the bile via an alternate pathway. But when mother’s intuition began to nag at Margaret again, she knew that the procedure would ultimately fail.
After enduring multiple infections, Adeline’s belly began to fill with fluid, and her liver grew to where she was severely uncomfortable and had trouble breathing.
“Our sweet daughter was in end stage liver failure,” Margaret explains. “At that point, seeing her suffering and having such a miserable quality of life, the word ‘transplant’ began to change in my mind, and it became a symbol of hope; realizing that it was transplant or death for our sweet baby.”
However, since 20 people die each day waiting for organs that never come, after waiting several months on the transplant list, Adeline’s doctors asked Margaret if she wanted to be tested as a living donor match, to donate a piece of her liver to Adeline.
“I jumped at the opportunity,” says Margaret. “Being able to give my daughter a piece of my liver would be the most amazing thing I could ever do in my life. It was like a weight had been lifted from my shoulders and I could finally breathe again.”
So in February, Margaret, saved her daughter’s life, becoming the first living donor transplant at Children’s Healthcare of Atlanta Hospital since 2014.
Adeline is now 14 months old, and meeting all of her milestones. But Margaret will never forget what they went through, which is why when Analy Navarro joined a Facebook group looking for information on biliary atresia, Margaret wasted no time in reaching out to her.
“I was a first-time mom, and although I had taken the baby classes, no one ever talked about poop color,” Analy explains to Babble. “I didn’t know that anything was wrong.”
When Analy’s daughter Julia began to struggle to gain weight, and developed a yellow-green tan that never went away, Analy’s intuition kicked in too — and it wasn’t long before Julia was also diagnosed with biliary atresia.
“Julia wasn’t eligible for the Kasai procedure because she wasn’t diagnosed until she was four months old, and by then, the chances of the procedure working were so low, that her only reasonable option was a transplant,” says Analy.
Julia was placed on the transplant list, but after several months of waiting, and a continued decline in her health, she was moved to a category reserved only for the most critical of patients.
“We were so hopeful that a liver would come in, and our wait would finally end,” Analy recalls. “I remember we answered every single call we received, and I dreamt of the moment someone would walk into our hospital room with a big smile on their face, letting me know that they had a liver for Julia; that her gift of life had finally arrived and that it was go time. That moment never came.”
In an expedited process, Julia’s team, also at Children’s Healthcare of Atlanta, rushed Analy through testing to see if she may be a match for Julia; and luckily, she was.
“My liver was just the right size,” says Analy. “It all seems like a blur now but I remember how incredibly happy I was to be a match and how light I felt; like I could finally breathe again.”
Two moms, both having given life to their daughters not once, but twice.
But the story didn’t end there. Grace Nguyen, who had been following Margaret and Analy’s stories in their same Facebook group, was also told that her daughter Norah needed a transplant after a failed Kasai procedure. When she visited the hospital to see if she was a match, she met Navarro — telling TODAY that the experience was “definitely comforting.” The transplant for her daughter was successful as well.
Yet as Margaret is quick to point out:
“While Adeline’s story may be heartwarming, there are all other families all over the world who are not as fortunate. This disease does not discriminate. Imagine walking away from a hospital empty-handed, with an empty car seat in your rearview mirror. That has to be the worst pain one can feel on this earth. That is why it is my lifelong mission to promote organ donation.”
“I think that the biggest misconception that people have is that there are enough organ donors to go around,” Analy chimes in. “But I personally know of families who have lost their children, waiting for an organ that never came.”
Not everyone finds a match in their family, and some organs aren’t able to be donated by a living donor. Every 10 minutes a person is added to the waiting list, and nearly 8,000 people die each year, waiting on organs that never come.
“I think a lot of families say no to donation after a loved one has passed away, because they don’t want to put them through any more procedures,” says Margaret. “And while I 100% understand where they are coming from, it doesn’t make the grief and pain go away. But for every person who does donate, they are able to save eight lives. Their heart can go on to beat again. They will be honored and adored by the families that receive their gift. I promise you that they will be in the recipient families’ mind everyday, and their legacy will live on.”
Today both Julia and Adeline are living a future that they almost didn’t have, all because they received the gift of a lifetime — the gift of life.
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