Jess’ Story – Do No Harm
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[Jess’ Story – Do No Harm]
[Jess’ Story] Source: LYBIO.net
I’m Jess and this is my story. That’s me with the long blond hair when I was about 12, around that time I started passing out, especially if something scared me. If like one of my cats jumped on the bed when I was sleeping. Of if mom ran a blender early in the morning. At first I get really dizzy and then I just faint. Mom said it was really frightening because I turned blue and stopped breathing. Maybe it’s a good thing that 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 (Health Centre) 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 our vacation in the Dominican. And I was so out of it, mom and dad had to take me plane in a wheel chair. 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 of 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’s what I had. But the neurologist said it couldn’t possibly be it. Long QT was found on one of my ECG’s taken at a different smaller hospital, closer to home. When we showed it to my doctors they told us that the ECG was wrong. It was so frustrating, not long after that we switched neurologists. Maybe this new doctor would know what’s 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 Long QT syndrome 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 Long QT thing. Mom, said he was condescending. But I was thinking: “Ok, maybe now we’ll get somewhere”.
So the cardiologist ordered a bunch of tests. A stress test, holter monitor, echo-cardiogram and another ECG. We went and had the test 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 Long QT syndrome. 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 our doctors kept growing. A few months after the cardiologist told me I didn’t have Long QT syndrome, we were still upset that I still 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, she was wasting money on an ambulance.
What were we supposed to do? Where were we supposed to go from here? Four 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 of Long QT syndrome.
My grad photo is supposed to be in the year book, not in an obituary. You know it’s ironic. I did get to wear my prom gown after all, even if it was to my own funeral. My limo, a hearse. 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 ok, you couldn’t save me. No time for goodbyes. No snuggling my baby niece. No arms to hold my parents up, no chance to tell my sister it’s ok, university will be great; you’ll love it. No telling my brother I could of loved him better. No way to telling the doctors that I’m working on forgiveness. But I’m just not there, yet. And so it began, life without me.
[Jessica Barnett] Source: LYBIO.net
I did after all carry the messed up Long QT gene and my family had to be all 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. (Why?) So this is what happened.
The misread 5 of my 7 test results.
The ‘head’ guy told the ‘heart’ guy that I didn’t have LQTS and they he didn’t 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 of not seeing my 18th birthday. (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 better 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 electrophysiologist, not cardiologists, should read ECGs for Long QT syndrome. (LQTS)
Us tracking software for all testing.
Implantable loop to be used in checking kids for heart arrhythmia’s.
One interfacing system for all hospitals in the province.
Make a safer place for doctors to admit their humanness, aka medical error, so they can be totally honest, and learn from those errors.
Disclosure-conversation training, don’t just say you’re sorry, mean it!!!
Judgements 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 being first, doctors second and not the other way around. Ever!
[Jessica Barnett] Source: LYBIO.net
So this is the end of my story. But not the end of me. Ya, I’m mad I’m here. And not there, but I live on the magnolia that blooms on the heaven day in May. And the paper lanterns set lovingly high in the night sky and in the gratitude of finding a heaven – sent – penny. I live on in the pace maker of my father and in the laughter of my sister. I live on in my name sake, the daughter of my brother. I live on in the remembrance 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 all those who are destined to follow me. Thank you for giving me a 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.
Jessica Barnett forever in our hearts.
Medical error is equivalent to:
3 jumbo jets, fully loaded, crashing, every other day. You do the math.
If we’d shut the aviation industry down in a heartbeat with safety records like these, why do we accept them in healthcare? Worried yet? Jessica thinks you should be…
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Updates to Jess’ story
Jess’ Story – Do No Harm. We met with my neurologist again. And he told me, he couldn’t do anything more for me. He told me to go home. Complete Full Transcript, Dialogue, Remarks, Saying, Quotes, Words And Text.