2-Month-Old Fayth Came to Rochester for a New Liver

Every now and then you see a story and think, "That's a straight up miracle." This is one of those times. I sit in awe and wonder at this story; a little baby girl in desperate need of a liver...the parents had a little Fayth, and she was going to make it.

Portions of this story directly from the Ronald McDonald House of Rochester.

"Ashley and Moses were flying high – their daughter, Fayth, was born and she was beautiful and in perfect health. Two months later…their daughter was airlifted to Mayo Clinic in Rochester. She needed a new liver."

The Rare Liver Disorder That Doesn't Play Fair

The name of what Fayth had was "biliary atresia." Her liver was in trouble because her bile ducts became blocked. What causes it isn't known...but it can cause severe liver damage, even in a teeny-tiny baby. So, a transplant it had to be...but that was not in the cards in their hometown. Fortunately, there is Mayo Clinic and the Ronald McDonald House of Rochester.

What's Mayo Clinic?

Ashley and Moses didn't know Mayo Clinic before Fayth's diagnosis, but if you're a parent, you know you'll do anything for your kids, so to Mayo Clinic Fayth went.

"Ashley and Fayth traveled together, as Moses stayed home with the other children. Ashley said it was stressful and scary; she had never been away from home for an extended time and they did not know anyone in Rochester. But that changed quickly as well.

“We never felt alone,” said Ashley. “The House is so warm and welcoming.”

Ashley stayed at the House while Fayth was inpatient for her liver transplant and they stayed at the House together following her transplant."

The Place Is Clean Clean!

I'm not going to talk about the transplant itself...except to say...tiny child alive today because of a liver transplant! Just awe inspiring. I want to talk about why houses, like the Ronald McDonald House of Rochester, are so vital.

In the story, Ashley said she and Fayth feel safe at the house.

"After her transplant, I was afraid to take her to hotels, stores, restaurants; but the House is so clean.”

It has to be. Even before the pandemic, the many homes in Rochester, from the Ronald McDonald House of Rochester to the American Cancer Society's Hope Lodge, had to be clean because patients so often are in a weakened state. In Fayth's situation, her immunity is compromised by the medications that keep her body from rejecting the liver.

It's been called a home away from home, and when you're a teeny tiny baby, and you've had a teeny tiny liver transplant, you need to be home. You need to be with loved ones. And when you can't, you need to be surrounded by love and understanding and community because that's a big part of how the body and mind heal. It's also how a patient's caretaker, often the mom and dad, have a chance to recharge and get ready for another day.

Imagine Finding Out Your Child Needs A Transplant...

Your first thought is of course, we'll do this, and then take the next step (your life quickly becomes "what's the next step?"). But when you are making hurried plans to travel, lining up hotels, airlines, rental cars, and meals, it hits you like a ton of bricks and many people feel wildly overwhelmed.

Places like the Ronald McDonald House of Rochester lift a big part of that burden so you can spend your time, energy, and love on your child. Pulling back the covers at night, slipping between the cool clean sheets, and thinking over the day, you remember the wins, the concerns, the laughs, the worry, and you make a checklist for the next day.

But that list will NOT include "find a place to say" because you're home away from home is just what you needed. Or as Ashley said,

“Thank you,” Ashley said. “We were so scared. We didn’t know how we would pay for a hotel and meals. We didn’t know how long we would be in Rochester. We don’t know if we would have been able to make it work."

Thank you to the Ronald McDonald House for letting us use your story. You do good work, my friends.

As always, if you have a comment, complaint, or concern about something I wrote here, please let me know: james.rabe@townsquaremedia.com

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