Practicing A Standard of Hope in Healthcare

It’s been a few years since I’ve written a full-fledged article geared at a target audience; something more than just a blog. However, our most recent experience getting my son’s routine ECHO left me disconcerted, and the best way for me to sort out my feelings is through writing. So here I am again, giving it a go.

My son, David, is on an anticonvulsant that, oddly enough, requires him to get an ECHO every 6 months just to make sure that it isn’t having any adverse effects on his heart. We are now on his 4th ECHO for this particular medication, so it has become somewhat routine. 

In addition to seizures, we recently received diagnoses of Major Neurocognitive Disorder (yes, like Alzheimers and dementia) and Autism. David is only 14. His rare syndrome (Febrile Infection Related Epilepsy Syndrome) has resulted in severe intellectual disability as well.

So back to our routine ECHO visit. David was having a really good day. We brought his iPad so he could watch movies and feel as relaxed as possible while undergoing the test. Moana was his particular choice this morning, and he kept telling me that he was Maui. When we were called back to under go the test, I helped David take his shirt off and he laid down on the table. When the ECHO tech put the gel on his chest, it was a little warmer than David expected. She waited a couple of minutes for it to cool off and then proceeded to move the wand over him. David did mention sensitivity in a couple of areas where she moved the wand, but he is very sensitive. She moved the wand more gently, and he didn’t complain further. For the rest of the procedure, he was very quiet and attentive to his movie. 

I was pleased with how well David did during the procedure. When I helped him put his shirt back on I praised him for how patient he was. He then told me he wanted to play outside when we got home, which I was happy to oblige.

A few hours later I received a notification on my phone that David had a new test result. Curious to see the results, I immediately logged into the medical portal to take a look. 

On the second page of the test results, what I saw shocked me. It read, “The image quality was fair; uncooperative patient. The suprasternal notch views were not obtained.”

My stomach sank. David did so well! I was there the whole time! How could they say he was uncooperative? I’ve been around him when he was uncooperative, and he most certainly was not today. 

I debated calling the hospital. I hate being “that” mom. But he also doesn’t deserve to be labeled “uncooperative” when he wasn’t.

Ultimately, I did call. When I was connected with Peds Cardiology, the ECHO Tech who performed David’s ECHO was the one who answered. 

“I was with him the whole time during the procedure,” I said. “He wasn’t uncooperative. He was having a really good day.” 

“No ma’am, he wasn’t uncooperative. That’s just a term we use for patients like him, where life is just a little harder for them than it is for others. He seemed sensitive in some areas and was so happy watching his movie that I didn’t want to interrupt him. I would have had to turn him on his side to get that other result.”

“Okay…” I was kind of at a loss for words at that moment, trying to decide if this was the hill I wanted to die on, and over the phone at that. “He wasn’t uncooperative, though.”

“No, he wasn’t. If he were uncooperative I would have put, ‘patient was extremely uncooperative.’”

That made me feel slightly better, but not enough to erase the heartbreak on my son’s behalf. 

Unfortunately, I knew that pressing the matter further with this single ECHO Tech over the phone would not benefit my son the way I’d like. 

“Okay, I just wanted to make sure. Thank you so much. Have a good day.” 

I hung up the phone. Pressing the issue further with the ECHO Tech wouldn’t benefit my son the way I wanted to, but writing about it can reach a lot more people, and possibly make a difference.

You see, my son wasn’t even given the chance to simply turn on his side for that procedure. That chance was taken away from him from someone who yes, had good intentions, but did not realize that in doing so, she took away the potential of him succeeding, and also labeled him “uncooperative” on his medical record. This was a blatant example of ableism.

I have hope for my son. I believe he can succeed. I believe that if given a choice, he is capable of making the right decision. He doesn’t always, none of us do. Yes, life is exceedingly more difficult for him than others, but I know what he is capable of, and I have hope for him. And if I have hope for him, then any medical professional who expects less from him is doing him a disservice. 

I expect that when we go into a medical practice, David won’t be labeled as “uncooperative” because he wasn’t given a chance to simply lie on his side. I expect that David will be given choices because competency is assumed until proven otherwise. I expect that he won’t experience ableism in healthcare. I expect a standard of hope.

(Updated and Revised- Originally posted on A Bolus of Hope March 9, 2024- I have since deleted that particular website.)