Traveling with SCID: Our Experience

Whether travel is a passion, or just a necessity to visit family or friends, it is something that brings up unique challenges and anxieties for SCID families
Audrey, Dean’s mom

The following article was first published in our March 2023 Quarterly Newsletter

Traveling with SCID: Our Experience

One of my biggest passions in life has always been traveling. I grew up in the Midwest, so most of my travels as a child were done in an RV with my family. I loved experiencing new places, and most of all, enjoying warmer weather. As I got older, I studied abroad to Greece in college, moved to California with my husband, and took every opportunity to travel domestically or internationally with family and friends. Traveling brought me so much joy that I was certain I would keep up my busy schedule even after becoming a mom.

I traveled to England and France while 18 weeks pregnant with my first child and couldn’t wait to continue experiencing the world with a little one in tow. Reflecting on this time brings up so many thoughts and feelings as I was so blissfully unaware of what was to come just a few months later with the birth of my son and his SCID diagnosis. Once the ability to travel was in sight after so much isolation, the pandemic began. At this point I completely stopped thinking about when or if we would travel again. It was disheartening.

Fast forward a couple of years, and things were finally looking better. My son was thriving, fully vaccinated, and COVID numbers were slowing down. My husband, TJ, and I finally began our discussions around travelling for the first time. Whether travel is a passion, or just a necessity to visit family or friends, it is something that brings up unique challenges and anxieties for SCID families. These feelings were all so new to us, given that we had never thought twice about travel previously. It was a huge change and a lot to process.

To calm our nerves, we knew we needed to focus on the factors that were within our control in an objective manner. First, we considered the state of my son’s health. Was he cleared by his care team? Was he stable? Was he vaccinated? Could he wear a mask? Where would we take him if he got sick while we were out of town? All of the questions surrounding him came first.

Next, we made sure to discuss the guidelines that were recommended by our care team with our family and friends we would be visiting. By discussing these guidelines in advance, it allowed us to share what would be necessary for us to be able to visit, and to also set expectations around the level of transparency we needed to be comfortable. This included being able to openly discuss vaccination status, recent or current illnesses/exposures, and their willingness to wear masks or social distance until our comfort level increased. Navigating these types of conversations can be difficult, but it was the most impactful part of our preparation process. We were able to receive the encouragement and reassurance we needed from these conversations and finally felt ready to take the leap.

Once the decision was made, the other factors within our control became our focus. What could we do to make the flight safer? Would a one-way flight be better to reduce exposure vs. having a layover? Should we drive instead? What cleaning/precautions items should we have readily on hand? TJ and I worked together to go through all the details and got everything booked. Before we knew it, the day finally came.

All of the preparation and the focus on what we could control made the travel day go so smoothly. And to my surprise, it felt really natural. I was confident that we had done everything we possibly could. It was freeing to trust that we were ready and that my son was ready. After almost three years, we got to experience our son being loved and held by so many who had previously only been able to love him from afar. It was so special and so worth it.


Don’t miss an issue of our Quarterly Newsletter. Sign up now.