Johanna with her family

Jess's Long QT story

'I survived a brush with death six times'

Jess Berenyi was 14 years old when she suffered what she thought was a seizure. Doctors failed to find anything wrong and for the next three decades; she had to live with having an episode every few years.

That was until it nearly killed her, after giving birth to her son.

She then discovered her ‘seizures’ were cardiac syncopes caused by Long QT Syndrome – an arrhythmia condition where the heart can stop and cause sudden death.

Jess has now survived a brush with death an astonishing six times.

What do you remember about the first time you collapsed?

Jess as a teenager

It was 1995 and I was about 14. I was sitting on the couch at home and was on the telephone with a friend. Then suddenly I woke up. I'd been unconscious, my ears were ringing, and I felt very unwell. I went to the hospital and they ran EEG’s to test my brain waves but couldn’t find anything wrong so sent me on my way.

I then had another episode at a party about a year later and was also unconscious. I went back to hospital and again they couldn’t find anything wrong and told me that kids sometimes have epileptic seizures, but that I would most likely grow out of it.

It was awful and I had several panic attacks because I did not want to have another episode in front of my classmates. Fast forward four years and I was sleeping over at a friend’s place when I had another one. My body was paralysed but despite that, I didn’t go to hospital. The next one was when I was 25 (2005) living in the UK, and I was also sent away by the NHS.

You then had a big gap before your next episode just after your son was born.

In June 2016, my son, Hamish, was three months old, and I was breastfeeding when I had another one. I think he saved me as he was screaming during the episode, and it pulled me back into consciousness. I was able to grab the phone and call for help.

Jess with her son in hospital

The paramedics discovered my heart was in atrial fibrillation and at hospital it did not settle. They told me that if it was still like that the next day, they would defib me to get my heart back into a regular rhythm. Luckily for me, a specialist doctor was on the rounds and looked at my charts and saw the Long QT. I had to stay in hospital for two weeks because I was on lactation medicines which can cause Long QT – so they wanted to check if the medication was causing the issue first. Meanwhile, Hamish was not allowed to stay with me which made things very hard because I was still breastfeeding.

After two weeks, they told me my QT interval had shortened which was good, put me on twice daily beta blocker medication and told me to come back in a few months for genetic testing. Although my QT had shortened, it hadn’t shortened enough so the doctors suspected it was a genetic issue. I made it clear I didn’t want to wait a few months because I had a child at home, and I was worried about collapsing again. I could potentially kill him if I fell with him in my arms.

What were the results of your tests?

It was revealed I had Type 2 Long QT – which has a large spectrum of triggers. Once I had that diagnosis, I was finally deemed a high-risk patient. They began to investigate my family history and it was revealed my mum and grandmother also had it, as well as some of my mum’s siblings, my cousins and extended family on my maternal grandmother’s side. The good news is that my son doesn’t have Long QT – that was a huge relief for me. It was also recommended I have an implantable cardioverter defibrillator. At first, I didn’t want to, but my doctor said that I had had just been lucky to have cheated death five times when my heart had returned to beating regularly again on its own - but that it might not again. That made up my mind. Being a new parent, I had to think about the impact of my potential death on my baby son.

Jess and her son

Knowing your family history, will you try for another child?

There would be a 50/50 chance that I could have a child with Long QT and whilst it’s possible to screen an embryo for this condition I have been scared to embark upon this journey as a single parent due to the higher post-partum risks. Long QT 2 is exacerbated due to sleep deprivation and post-partum hormones.

Do you feel safe knowing you have a defib?

I don't feel safe at all, to be honest. The defib is meant to do its job, but I had my last episode when I was in hospital getting it replaced. On my way out, I was in a wheelchair, I said I didn’t feel well after taking a strong painkiller and then I fell out of the chair. Luckily my heart did what it has done in every other episode and returned to a normal rhythm quickly.

After that operation, I got home and thought this is what I have to live with every single minute of the day, that I might die at any time.

Psychologically, I had a really difficult time and there is not much support out there. I haven’t ever found a therapist who specialises in helping people manage life after a chronic health diagnosis. I, fortunately, found a few groups on Facebook that have saved my life. I can vent to people experiencing similar things and talk about my experience but there needs to be a proper support system for people like me who have been through a diagnosis and experiences like this. The mental health impacts, especially for a new mum, are profound.

Acknowledgement of Country

The Victor Chang Cardiac Research Institute acknowledges Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.

Victor Chang Cardiac Research Institute - The Home of Heart Research for 30 Years