When she was just six weeks old, we pushed to have her raspy, gurgling breathing evaluated by an otolaryngologist even though her pediatrician said it was nothing. It wasn’t nothing; we were justified in our followup.
When she was a year old, the sound of milk rattling in her throat got us another appointment with the otolaryngologist, and even though the pediatrician didn’t think it was strange that our one-year-old would not eat solid food yet, the otolaryngologist took note. The fact that she would hold one-fourth of a blueberry in her cheek for hours rather than swallow it was a sign that her esophagus was so narrow that even that sliver of food was too irritating to pass through. It was a clue. Somehow, I’d known to tell someone, and it was part of the path to diagnosing her vascular ring.
When she was four, we’d dutifully tried to wean her from her reflux medications, then taken her to a gastroenterologist when she responded poorly. We’d said yes to the endoscopies, accepted the diagnosis of eosinophilic esophagitis, and diligently followed the six food elimination protocol. We read labels, scoured our kitchen, protected her from potential allergens like fierce animal parents. We did everything they asked, and advocated for her emotional well-being in school and with friends.
We did everything we could have done except tell her doctors to read her chart. If we had thought to ask them, hey, do you think this esophagus problem could have anything at all to do with her aortic arch?, that might have been all we needed.
Assumptions — on our part and on the part of her doctors — were what lost my daughter three years of carefree childhood. In this journey, what lost us the most was making the simple mistake of assuming that the medical system was as diligent as we were. Because of that, I’ve created a simple handout — cleanly laid-out, easy to read in short skim — that I can use for any future specialist visit my daughter has.
The version below is what I wish I’d had in 2013, when we discovered that her aorta was crushing her esophagus:
You can make a document like this for free at Canva.com. Your child’s sheet might need to be longer, but the important part is that you get the most important information into an easily-digestible format. It should be something you can hand to your doctor when s/he sits down to talk with you — something more concise than the chart but containing the information you think is most important. You can change your principal concerns each time you visit the doctor; while some practices do ask you to write down your primary reasons for today’s visit, some do not. Getting this information front-and-center gets everyone focused right away.
It seems too simple, perhaps. It seems like all of this information would be easy to find in a medical chart, and that’s true, but it’s also true that doctors may or may not have had the time or the inclination to read your child’s entire medical chart. I wish I had known that.
I wish I had put a big, bright sticker on my daughter like the image at the top of this post.