ST. LOUIS (KMOX) - A Florissant, Missouri family is counting their blessings after their six-month-old baby had a successful liver transplant.
Baby Eden Hernandez was born in July 2023 to parents Sarah and Kevin and was a very happy baby - so much so she had nurses at St. Louis Children's Hospital pop their heads in often, just to make her laugh.
But then Eden was jaundiced for a while. The parents went to a doctor for a weight check and blood test.
"The next day, he called us and said, 'Hey, we need to go to Children's Hospital for further testing,'" Sarah Hernandez said, "and then it really snowballed from there."
In September 2023, Eden was diagnosed with biliary atresia. According to the American Liver Foundation, one in every 8,000 babies are born with this disease. There is no known cause. Without proper treatment, infants can develop cirrhosis within 6 months and liver failure within a year.
After the diagnosis, Eden needed surgery and underwent a Kasai procedure, which can slow or sometimes prevent the risk of cirrhosis and liver failure.
"They (had) to move quickly because the surgery is more successful the younger the baby is. So even at two months old, that was actually the latter end of things and so they were trying to speed it up," Sarah said.
However, even with this, about half the amount of babies with biliary atresia need a liver transplant by the age of two. Time was of the essence for Eden.
Dr. Janis Stoll is a pediatric liver disease specialist at Washington University and St. Louis Children's Hospital. She said people can be on the organ waitlist for more than a year because of the number of patients in need.
"Our kids face a particularly difficult challenge because they're young. And the kids who are less than one year of age have a higher risk of morbidity and mortality while waiting on this list," Stoll said.
When December came around, Eden needed a liver. The urgency of a transplant is measured by the PELDS (Pediatric End-Stage Liver Disease) score. The score is based on the disease itself, mixed with advocacy statements from a doctor. The score is out of 40, with 40 being gravely ill and in dire need of a liver. Eden's score sat at a 37.
Sarah said it can be difficult knowing your baby needs an organ, while many others are also waiting for one.
"It's kind of a competition of who is the sickest," Sarah said, "like who's going to die first without the organ."
Even with this, Sarah said she tried to shift her perspective on things.
"I said I want to practice radical acceptance of this, I want to take it and just accept it. I'm not going to fight against it," Sarah said. "I don't want to fall in to just being pessimistic."
Her father Kevin, on the other hand, said he was still afraid while waiting to hear if anyone was a potential match.
"With medical things, bodies are weird and things could change so quick," Kevin said. "I constantly [had] that fear that we could lose her and she may get too sick to where she won't be eligible for a liver."
At the start of the new year, the parents took to social media with a poster of information about Eden and her need for this organ. Only a few hours after seeing the post, a cousin who married in to the family reached out. Nadia Hussain is from New Jersey, and she saw her blood type - Type O - was what Eden needed.
Hussain said when she first heard of Eden's disease, she felt helpless. But then she saw the post.
"When I saw the opportunity to not be helpless, and I could do something... I jumped at it," Hussain said. "If it's a possibility that I could be of anything positive for Eden, I'll do it."
Hussain is the Senior Campaign Manager for a group called MomsRising - a social welfare organization that focuses on advocacy for mothers and children. She's a mother of three and cares for children in her everyday work, but still feels this is the most noteworthy thing she's done.
"Being able to do this for Eden to me is just the highest honor. To me, it's one of the most important things I've ever done in my life," Hussain said.
Although Sarah feels joy and relief with a successful transplant, she said it's important to note that many other babies' families are dealing with this disease or others and need help.
"They come into the world without really having an opportunity to have lived, or done anything, and their parents or their families are faced with these really difficult decisions," Sarah said. "It's really hard to see a child suffering. So I think that if somebody feels inclined to do something good in the world, I think that's a great opportunity."
Dr. Stoll, who was also Eden's doctor, says the outcomes for pediatric liver transplants right now are excellent.
"We really try to optimize these patients prior to transplant, so that way they recover quicker after their big operation and we can get them back to their normal life with their families," Stoll said.
Dr. Stoll says what is unique about the liver is you don't need the full organ to do a transplant -- a piece of a liver from a living donor can be successfully used since the liver regrows once it's transplanted. Liver donors usually have 80% of their liver back after six weeks, and are almost 100% healed after six months.
The Hernandez family is set to head home to Florissant next week with Eden, after a long and tough journey.
"We're now entering healing, like starting to go on the road to health and recovery and home," Sarah said.
To find more information on being a donor you can click here.
To be a living liver donor, go to St. Louis Children's Hospital or call the donor line at (314) 362-5376.
You can click here to donate to Eden's foundation.