Well, I’m about 3 months late with this post, but better late than never right? I’ve been meaning to share about our experience traveling internationally with Emmett because it’s something that (prior to him being born) I had worried might never be able to happen. When you find out about your child’s CHD diagnosis, you realize just how many aspects of life it can impact, and in those early stages of his diagnoses before he was born, we simply didn’t know how things would go. There are so many things to which the answer was “it’s hard to say, we’ll just have to wait and see once he’s here”. Would he be well enough to travel? Would he be allowed to go internationally/far from US medical care? How would it impact not only him, but our family’s ability to take trips–something we love to do?
Because this was never a guarantee, I am beyond grateful that (first and foremost) is Emmett doing very well, and that we were able to take an international trip with him! I therefore wanted to share our experience with traveling with a heart warrior internationally, in the hopes that if you have a young HW or recently found out about your child’s diagnosis, that this might give you hope of what may be possible. Of course each child with CHD is different, and what is possible for one heart warrior may not be for another. But for Emmett and our personal circumstances it was very doable and incredibly rewarding! I am still feeling so thankful that despite everything CHD has robbed us of, the joy of traveling as a family is not one of them!
Let’s start off with where we went: we traveled to Nice, France in October of 2022 when Emmett was just about to turn one year old. We went for two full weeks and it was glorious! The first step was of course to consult with Emmett’s cardiologist and get his approval, so at one of his routine follow up appointments, we brought him the idea that we wanted to go and to our relief he was very encouraging! He told us that because Emmett is stable and doing well, that he saw no objections to going. Emmett was also post-Glenn at the time, which means that he was no longer inter-stage when single ventricle babies are most vulnerable. I don’t think he would have advised us to go then had we wanted to. Besides his health status, his cardiologist also took into account our destination. He told us that France has an excellent health care system, and that the Fontan surgery was actually named after Dr. Fontan who developed it, who was from France–so he said we would be in good hands : )
“Travel opens your heart, broadens your mind, and fills your life with stories to tell.”
Our trip was after the worst of Covid, so there were no travel restrictions or requirements thankfully. We did make sure to get Emmett (and the rest of the family) flu shots before leaving, but were not able to get his first Synagis dose. In case you are unfamiliar, Synagis is a monthly shot to protect babies who are most at risk against serious RSV complications.
Our cardiologist explained that the plane’s cabin is pressurized to 5000-6000 ft., which reduces the amount of oxygen available, similar to being on a mountain with higher altitude. He told us that we may notice Emmett’s sats drop a bit on the flight, particularly the longer transatlantic one, but that it would only be temporary and as soon as we land it should return back to his normal range. In fact we never noticed any difference in Emmett’s coloring or behavior, and honestly it wasn’t even on the forefront of our mind during the flights (keeping him and big brothers occupied and content were at the top of our priorities!).
Ahead of time we had looked up the nearest children’s hospital to where we would be staying, mostly just to have peace of mind that it was there should anything happen. We have been very fortunate to never have needed to take Emmett in to the hospital for a sudden illness or concerning issues outside of his planned procedures/surgeries. I know some heart warriors who have been admitted for something as casual as catching a bad cold and sats dropping– we have thankfully not had issues like that. We were therefore hopeful that we would not need the hospital, but again knew where it was just in case.
When we asked our cardiologist whether we needed to bring anything special besides his pulse ox and medication, he told us that if we really wanted to, we could print out and bring a copy of the most recent cardiology visit’s medical notes which would include diagnoses, etc. In the end we did not do this since the doctor didn’t make it seem like it was necessary. However it may be a good idea if you think there is a chance that you’d need to seek medical care while away. I bet if we had needed to take Emmett in to the ER or urgent care for a heart related issue at least once prior to the trip, we would have reconsidered bringing the printed medical notes.
Like previously mentioned, we of course had to make sure we packed Emmett’s pulse oximeter and medication. Emmett is now just on half a tablet of aspirin several times a week, so thankfully we did not have to worry about several kinds of meds, and aspirin is very simple to pack and store. His pulse ox is rather bulky, but not all that inconvenient to bring. I did make sure to pack his aspirin and the pulse ox in a carry on bag, so in case our luggage got lost we’d still have it. The last thing you want is your luggage to get lost or delayed and frantically realize that you have medically important things in your checked bag!
Prior to our trip, we also bought international travel health insurance. We got ours through GeoBlue- Travel Medical Insurance Plans, the voyager (single trip) plan. This is a good idea regardless of whether you or a family member have a medical condition, as you never know what can happen and this can help cover unexpected medical expenses abroad–we actually bought it for the whole family. With Emmett’s condition, we definitely felt like we wanted the additional comfort knowing that we had international coverage.
Beyond that, we just had to trust that everything would go smoothly and we wouldn’t run into any issues. In the end, everything went according to plan! Emmett did wonderfully on the flights (as well as any 1 year old can be expected to) as well as on the trip itself. Thank you for following along on our journey and I hope that if you’re a newer heart parent reading this, that it gives you hope of what could be possible.
