Parents and son are all on a path of discovery with Alagille syndrome

Our son Finley was born with Alagille syndrome in 2021. Since then, I’ve been on a journey to learn about his rare disease and how I can best support him. This path of discovery has been new to me, both as an adult and a parent.

As we approach Finley’s fifth birthday and the start of kindergarten, he’s also continuing down this path of discovery. I anticipated these days would come, but even though I feel prepared, some of the questions he’s started asking are harder to navigate than I’d expected.

My wife, Dani, and I have been teaching Finley about liver disease for as long as he’s been able to understand. We’ve developed a language for him to comprehend why he takes medicine each day and what each medication does. One is for his itch, another makes his “poop brown,” and a third gives him sunshine, among others. We’ve had conversations about his itching, known as cholestatic pruritus, and why he is smaller than some of his peers, especially when he started noticing the difference. These conversations will continue to evolve.

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What I worry about

Part of me wishes he could pause at this point in his understanding. He knows he has liver disease, but in his day-to-day life, he’s just another kid. He goes to day care, rides his scooter, and plays on the playground like any other child his age. He can express a range of emotions, including joy and anger. However, anxiety, which I’ve experienced often, isn’t yet part of his emotional repertoire. But I wonder if it will be one day.

Finley is ready with a smile for picture day. (Courtesy of Jay Sandstrom)

I know heavier questions will come as Finley grows older. Eventually, he will have to explain Alagille syndrome to other kids. I worry about him being bullied for his size, for being itchy, or for the days when he looks jaundiced. I realize that I’m projecting my worries onto Finley. Knowing his personality, I believe he’ll have no trouble making friends on the playground or standing up for himself.

I’m preparing myself for those future conversations. I know I’ll have to explain why he needs to see a doctor while his brother doesn’t, and what it means to consult specialists like a gastroenterologist, cardiologist, and dietitian. While I feel ready for these discussions, I’m less prepared for the emotions that I’ll experience.

Recently, I attended a football game with our older son, Jackson, where a Make-A-Wish recipient participated in the coin toss before the game. Watching the video montage on the big screen stirred up a range of emotions directly tied to Finley’s medical experiences. I know I need to continue working through my own trauma to be there for him when the time comes.

I’m incredibly proud of Finley, even on days when I feel frustrated because he is a 4-year-old who struggles to listen. He is a smart, determined, and creative child. I know he’ll have tough questions as he grows older, but we’ll be there to answer them.

Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.

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