I’m Jess, and this is my story. That’s me with the long blonde hair when I was about 12. Around that time I started passing out, especially if something scared me, like if one of my cats jumped up on my bed when I was sleeping or if Mom ran a blender early in the morning. First I’d get really dizzy and then I’d just faint. Mom said it was really frightening because I’d turn blue and stop breathing. Maybe it’s a good thing I don’t remember much about it… The ambulance had to come a lot and it was really scary because we just didn’t know why it was happening…
They sent me to the IWK, our big children’s hospital, and the doctors there thought it was epilepsy, and then about a year later, they said it wasn’t. It was so frustrating because it just kept happening! It even happened when we were on vacation in the Dominican, and I was so out of it, Mom and Dad had to take me to the plane in a wheelchair! So when we got home, we went back to the IWK, but they still didn’t have any answers. It went on like this for a couple more years, with lots more hospital visits, but never finding out what was really wrong with me.
By now I’m in grade 10 and Grandma had read something about Long QT Syndrome, a heart problem, that looks like epilepsy but it’s not, and it’s really serious. We asked the doctors at the IWK if that was what I had, but the neurologist said that it couldn’t possibly be it. Long QT was found on one of my ECGs taken at a different, smaller hospital closer to home, but when we showed it to my doctors, they told us that the ECG was wrong. It was so frustrating, and not long after that we switched neurologists. Maybe this new doctor would know what was happening to me…
Mom and I asked the new neurologist to refer us to cardiology for a full work-up because we still thought it was LQTS, but he wasn’t happy about sending us. He told us it was a waste of time but he said he’d do it anyway because we needed to let go of this “LQT thing.” Mom said he was condescending, but I was thinking, okay, maybe now we’ll get somewhere!
So the cardiologist ordered a bunch of tests; a stress test, Holter monitor, echocardiogram and another ECG. We went and had the tests done and then met with him again for the results. We were so surprised when he told us that all the test results came back negative and I didn’t have LQTS. Mom argued with him, she even tried showing him some information she found online about it and she mentioned the one positive ECG again, but he just dismissed us.
I was so mad!!!!
So grade 11 and 12 continued to see me fainting and our frustration with my doctors kept growing. A few months after the cardiologist told me I didn’t have LQTS, we were still upset that I didn’t have a diagnosis and we met with my neurologist again and he told me he couldn’t do anything more for me. He told me to go home and learn how to breathe through a ‘spell’ and told Mom that she was wasting money on an ambulance. What were we supposed to do? Where were we supposed to go from here? 4 long years this has been going on… He’s wrong, this is real and it’s NOT in my head!!!!
And ten months later I died…
Not now, not ever… No more birthdays, I’ll always be 17…
No graduation, NO PROM!!!!
No telling my boyfriend, You did your best, it’s okay you couldn’t save me
No time for goodbyes…
No snuggling my new baby niece
No arms to hold my parents up
No chance to tell my sister, It’s okay university will be great, you’ll love it!
No telling my brother I could have loved him better
No way to tell the doctors that I’m working on forgiveness, but I’m just not there yet!!!
And so it began, life without me.
I did, after all, carry the messed-up LQT gene and my family all had to be genetically tested. As it turns out, my dad is the genetic carrier, but I want him to know that I don’t blame him… Luckily, my brother and sister are clear! It is so hard watching the pain my death has caused… My family, my boyfriend, my Auntie, my friends… I feel so helpless watching it all…
This didn’t need to happen!!
So, this is what happened:
- They misread 5 of my 7 test results
- The ‘head’ guy told the ‘heart’ guy that I didn’t have LQTS and then he didn’t really try to find it
- The Holter monitor test was never looked at until after I died, more than a year after I had the test!
- Misplaced paperwork, really? Think about it, I died because of misplaced paperwork!!!!
- ‘Selective thinking’ and ‘cognitive bias’ gave me pretty good odds I wouldn’t see my 18th birthday
- They didn’t even try an implantable loop to figure it out!
- My family sued, and won, but didn’t see the needed changes to save lives
- Litigation sucks, we need a different system to fix this
- After, the doctors wouldn’t meet with my parents, and everyone missed out on an opportunity to heal, even them
- The doctors didn’t mean for this to happen, but it did!!!
And this is what needs to happen now:
- Only electrophysiologists, not cardiologists, should read ECGs for LQTS.
- Use tracking software for all testing
- Implantable loop to be used in checking kids for heart arrhythmias
- One interfacing system for all hospitals in the province
- Make a safe place for doctors to admit their humanness, aka medical errors, so they can be totally honest, and learn from those errors
- Disclosure-conversation training, don’t just say you’re sorry, mean it!!
- Judgments and biases affect all humans, even physicians, and need to be considered in making a diagnosis
- Doctors need to listen to us, REALLY listen to us
- Doctors need to be human beings first, doctors second… and not the other way around. Ever!!
So, this is the end of my story, but not the end of me. Yeah, I’m mad I’m here, and not there, but I live on in the magnolia that blooms on my heaven day in May, in the paper lanterns lovingly sent high into a night sky, and in the gratitude of finding a heaven-sent penny. I live on in the pacemaker of my father, and in the laughter of my sister. I live on in my namesake, the daughter of my brother. I live on in remembrances of those who will always love me. And Mom… Oh, Mom, I live on in your fight, your fight for me and my gone-ness and for all those who are destined to follow me. Thank you for giving me voice when I had none. I will be with you always, laughing and loving you all, I will see you through.
I am Jessica, and I live on.