We will be traveling outside of the country soon. The anxiety I have and the planning necessary regarding my kids, who have been diagnosed with Alagille syndrome (ALGS), which also includes my liver-transplanted son, is a lot. We have traveled a few times, but it was domestically. This is the first time we are taking my transplanted son out of the country.
With domestic travel, I never worry about hospitals or doctors’ offices if needed because they are readily accessible to us in America. The country we are visiting now, however, is a small, “developing” country. I know their medical care isn’t top of the line, and the number hospitals is very limited. We likely will not need to visit one, but my mind is going in circles thinking about the possibilities that may occur.
Not only am I concerned about the accessibility of a hospital in the event of an emergency, but I also worry about the ability of the medical staff to treat my kids with a rare disease, especially one who is a post-liver transplant patient. Will they know what to do? How easy would it be for them to contact our medical team back home? In the event things took a turn for the worse, how would we get to another country to a hospital that is able to best care for my kids?
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Read about HCP resources for ALGS
In addition, I worry about medication. If we were in the US and lost medication, we’d be able to fill it at another pharmacy pretty easily. Now that we will be out of the country, that may not be an option. I know how to transport our medications and how to store them, but I fear them getting damaged or something happening to them and not being able to use them.
I am fully packed with plenty of what we need, even medication in the event the kids come down with a cold or have a headache. I am prepared with extra supplies like syringes and medicine cups. I have everyone’s medical script ready and all medications in their original packaging so that there’s no trouble at the airport. I know these thoughts are just worst-case scenarios.
Traveling in general isn’t easy, but travelling internationally definitely increases my anxiety. It’s more likely that we will never even have to worry about any of the concerns I’ve shared, but being a mom and caretaker of children with a rare disease offers up unforeseen obstacles and I always have to be one step ahead of the game.
