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Mia’s Mom, Kirsten Garlington, Shares:

We found out about Mia’s Biliary Atresia Diagnosis following her one month routine appointment. Mia was born with slightly jaundiced skin, but no one ever warned us it could be something serious or told us what symptoms to watch for. At every routine appointment after her birth, I kept asking, “What about her jaundice? When does it go away?” I was always reassured it was “normal” and nothing to worry about, but my gut always had a feeling of “this cannot be right or normal.”

No one told us that although her jaundice at birth was “normal,” to still watch for changes in her skin pigment changing or worsening nor to watch out for her stool color. No one mentioned that a distended belly or worsening yellow skin could be signs of something serious. At her 1-month visit—when she finally saw her assigned pediatrician (that both our children see)—everything changed. During a routine exam, Mia miraculously happened to have a bowel movement, and that moment shifted the entire course of our day—and her life.

Her pediatrician noticed several concerning signs: jaundice skin, pale stools, and an enlarged belly. He drew us a picture right on the exam table and said it might be something called Biliary Atresia or some type of blockage in the bile ducts of her liver. That same night, we were sent to Boston for further testing. It was confirmed: Mia had Biliary Atresia. By the next week, at just 5 weeks old, Mia underwent the Kasai procedure, a major surgery that removed her gallbladder and connected her liver to her small intestines.

It’s impossible not to get emotional thinking about that day. I trusted my gut, continuing to ask so many questions —and our pediatrician just happened to know what to look for and as a result, Mia got a fighting chance. I don’t know, and honestly don’t want to know, what life would look like if things hadn’t played out exactly the way they did. I truly believe that by the grace of God, that day saved Mia’s life.

Since her Kasai surgery, Mia has been hospitalized four times. Twice for extended stays due to fevers, weight gain issues, and reactions to routine vaccinations. One particularly tough stretch had us apart as a family for three straight weeks—the longest we’ve ever been separated. After one of those hospitalizations, we were home for only two hours when Mia pulled out her NG tube. We were told to visit the local ED to have it replaced, but there were other plans for us. Another fever was discovered, and back up to Boston we went for another week and a half.

Her vaccine reactions have also been rough. After her first round, she became extremely lethargic and couldn’t keep anything down. The second round was even worse—she spiked a high fever that Tylenol couldn’t touch, and we were readmitted again.

Despite it all, our little warrior girl is improving. Her liver numbers and other key levels are stabilizing. She’s currently on her longest stretch without an extended hospital stay. She’s doing okay—for today—and that’s what we’re holding on to.

Some days, it truly feels like we’re in survival mode. One day at a time is really all we can manage and it's not a reality for us anymore to look much further past today. It’s been an enormous adjustment—we can’t make future plans, take trips, or attend events the way we used to. Our reality is that we just don’t know what tomorrow will look like.

As hard as hospital life is, the staff at Boston Children’s—especially on Hale 10—have been a tremendous blessing and nothing short of incredible. The nurses, doctors, and child life specialists treat Mia like their own. They know Mia. They know us. And not having to re-explain our story each shift change is a huge relief in an already stressful environment. They’ve become our hospital family, and we’re so thankful for their dedication and care. Truly Unicorns!

We also have a 2.5-year-old son, and this journey hasn’t been easy on him either. Being away from him suddenly and for long periods of time has been heartbreaking. We’ve worked hard to help him understand what’s going on with Mia—especially when she doesn’t always “look” like a typical baby. The child life team even made him a special book to explain when “Mom, Dad, and Sissy” have to be away.

One of the most meaningful tools that has been gifted to us is a book gifted from the Doctors at Children’s sent in from the Liver Foundation called Bili the Brave. The story is designed to help children like Mia, as well as her brother, understand Biliary Atresia in a gentle, heartfelt way. The book was incredible and I personally cried reading it. The plush lion with the recorded roars from other children with BA was such a thoughtful gift. It’s helped us, and our extended family understand BA and continues to be a tool to help us explain something so complex to the tiny humans in our life.

This journey has been nothing short of a roller coaster. This journey has reshaped us. Our family dynamics have drastically changed. Who I was just a few months ago is not who I am today. As we settle into our “new normal,” we’re learning to adapt and stay grounded.

But the one thing that remains steady is the love and support from our village. Our friends, our family, our medical professionals, and even strangers who have stepped in to help. Through it all, our village has been our rock—friends, family, and incredible professionals who’ve lifted us up and continue to. There are no words strong enough to express the depth of our gratitude. For every meal dropped off, every text, prayer, visit, and kind gesture—we are grateful. Our village has helped us show up for Mia and Jackson every day, even on the hardest days.

We don’t know what the future holds. We’re still learning to navigate this new normal. But today, Mia is okay. And for now, that’s enough. 

The Tiny Transplant Titans is an organization that helps and supports tiny humans like Mia and their families! Please consider donating to a group that does absolutely amazing work!