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THE GIFT OF LIFE: Eden’s liver donor has surprising connection with family

By David Amelotti

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    FLORISSANT, Missouri (KMOV) — The last three months have been a rollercoaster for one Florissant family after their 6-month old’s life almost came to a tragic end but was saved by a living donor.

Sarah and Kevin Hernandez were celebrating the birth of their first child Eden, when they realized something was wrong and she would need a liver donor. Just before time ran out, they found someone almost a thousand miles away.

“When we brought her home from the hospital, we thought everything was normal,” Sarah explained. “She seemed like a normal happy healthy baby and then a couple months later she didn’t seem to be gaining weight and that was alarming to me.”

What the Hernandez’s first believed was jaundice, was actually much worse. Eden had Biliary Atresia. That’s a rare congenital disease of the liver and bile duct that stops a person’s body from absorbing nutrients.

“It’s uncommon,” Dr. Janis Stoll, a Washington University gastroenterologist at St. Louis Children’s Hospital explained. “It’s only in one to 8,000 to one to 20,000 births. It’s important for parents know their parent is jaundice at two weeks after birth they get checked to make sure there isn’t an underlying issue.”

“It’s not something we wanted but we prepared for needing a transplant,” Eden’s father Kevin said.

Time was running out to find a donor, so the family went to social media asking anyone with Type O blood to step up.

“I would do it,” Smita Nadia Hussain shared. “I would totally do it if they picked me. I was kind of anxious because I wanted to get picked.”

Nadia Hussain stepped up to be Eden’s donor. She’s Kevin’s cousin who lives a thousand miles away in New Jersey.

“Sacrificing a few weeks from my kids to give a lifetime for another family to have with their kid, to me that’s a no brainer, how I could I not do that,” Hussain said.

After an overnight flight and a week of testing, Nadia Hussain underwent a rare living donor transplant at Barnes-Jewish Hospital in mid-January.

“You can give a piece of your liver and then it will grow back to normal size in 4-6 months,” Dr. Stoll shared. “So, if you are a healthy adult and have the ability to donate an organ, a liver, kidney, it’s such a gift for someone who can be a recipient of that.”

In this instance, it’s a gift of life.

“It’s the best feeling in the world,” Nadia Hussain shared. “It’s just, this is, my opinion, the best thing I have ever done.”

“It really feels like that that we were on death’s doorstep and now we are looking at the future to take her first steps, and go to kindergarten, go to school and have these wonderful firsts that we wouldn’t have had before,” Eden’s mother said.

The Hernandez family along with St. Louis Children’s Hospital, Barnes-Jewish Hospital, and Washington University hope this story inspires others to give the gift of life through organ donations as there are so many children and adults on the transplant waiting list.

The Hernandez’s are back home. Kevin told First Alert 4 he was a little nervous to go home but thankful to have his family intact.

Nadia Hussain continues her recovery back home in New Jersey. She said it will be great to kiss her children in person instead of over the screen of her smartphone.

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