As the parent of a child with Long QT Syndrome Stephen White wants everyone to know about the condition and its impact

“Can we not just call it ‘Racy Heart’?” my daughter, Sinéad, asked as we drove home from school. I had just told her I was going to write a piece for the Irish Heart Foundation and was considering writing something about LQTS.

“That’s the name of your condition,” I said.

“Really dad, gee I never knew that” she said with the full-on sarcasm of a fourteen-year-old teenager.

“It’s such a boring name and no one knows what it is,” she said. Hence my opening line.

It seems to me that this medical condition is not as commonly known as it should be. Long QT Syndrome (LQTS) is an inherited condition that results in a disturbance of the heart’s electrical system causing heart rhythm problems.

Despite the fact that this condition can cause cardiac arrest in people of any age but especially the young, in my opinion it does not receive the coverage or publicity one would expect.

I am not saying that there have not been great strides and awareness around treating cardiac arrest, with the many now accessible AED machines that organisations like the GAA have installed in clubs nationwide, but there is still a lot more the media could do to highlight the condition.

Unusual circumstances and extraordinary coincidences

I never heard of LQTS or its effects until we discovered through the most unusual set of circumstances and extraordinary coincidences that my daughter was the carrier of the gene that causes LQTS.

As a young child aged five Sinéad always complained of her heart racing. As this was usually after playing or running around, we put it down to a normal elevated heart rate after exercise. It was only after she mentioned her ‘racy heart’ as  we were sitting watching TV (Peppa Pig or something equally highbrow) that I began to take note.

During a doctor’s visit for an unrelated  sore throat, I mentioned the ‘racy heart’ thing, thinking I was going to be told “ Oh that’s normal for their age dad* don’t be worrying. (*doctors always refer to us fathers as ‘dad’ especially when they are trying to put us at our ease). The checking and double checking and the production of what looked like a pocket ECG monitor along with the fact that she didn’t tell ‘dad’ not to worry, concerned me.

Cut to later that day in the Emergency Department (ED) when the duty doctor did pick up ‘something’ on an ECG. But this something was downgraded back to a ‘not to worry dad’ and we would be referred to a cardiac specialist in the future.

It was only after we met with the cardiologist that we were informed of Sinéad’s Long QT. At the meeting, the doctor had said that the heart was okay but that there was a problem with the distance between the Q and the T beats.

I must admit that when the doctor said my daughter’s heart was okay, I stopped listening. I wasn’t too concerned if the T took its time to go after the Q, surely the R and the S would fill the gaps. Thankfully, my wife Fiona continued to listen.

It was a silent car journey home. Bar the clicking from my wife’s phone which illuminated her teary-eyed face as she searched desperately for information on  LQTS there was not a sound. It began to dawn on me that this was much more serious than letters of the alphabet not behaving correctly. Contrary to the ED doctor’s advice ‘dad’ could only but worry.

Risk of sudden cardiac death

It was in the days after we received a copy of the cardiologist’s letter to the GP that we had good cause to worry. If this were a movie, the camera would have zoomed in on one particular line and then immediately cut to my wife’s now ashen face as she handed me the letter and pointed out the ‘no previous family history of sudden cardiac death.’

But there, very tragically, was a history. My wife’s cousin a seemingly healthy 23-year-old man suffered a cardiac arrest while running a race four years previously.

The pieces of this jigsaw were beginning to fall into place (albeit as we discovered later, we were looking at the wrong jigsaw).

Irish Heart Foundation supports

Our heads spinning and in-between contacting the cardiologist, GP, and genetics for testing we contacted Tracy Egan at the Irish Heart Foundation (IHF) . Tracy put us in touch with  Lucinda McNerney who had set up a LQT support group. I am not sure what we would have done without the IHF, Lucinda and the group’s help and support in those early days.

Now fast forward a little, I am standing in the Cavan Centre with a piece of string around my neck and a carboard box dangling around my nether regions as Frank (Lucinda’s husband) explains to the hushed (bar some giggling) crowd our new invention, the Picnic Portaloo.

We were at the LQTS support group’s weekend away introduction meeting, where we began with some ice breaking activities. This weekend allowed us to meet with people in similar situations. It certainly carried us through those early ‘confusing, hazy, what the hell is happening?’ days and gave way to understanding that we were not alone.

Not ever having heard of this condition before, it now felt that we had been inducted into some sort of exclusive club. A club known only to its members (all of which would prefer to be non-members).  A club that feels like the media want to keep LQT on the ‘QT.’

I do get the furrowed brow look when trying to explain why I carry my own AED machine to some of Sinéad’s activities. This is only to be expected. So, I attempt to inform.

As I begin to explain about arrhythmia and delayed beats, some people (understandably) glaze over as if I am discussing some  sort of algebra theorem. I usually have to throw in the words cardiac arrest as some kind of verbal AED to bring the listener back in to focus. I was previously one of those people and I suffered from  a case of ‘Hearing is Catching’ and blocked out all information when a parent told me of their  child’s ‘out of the ordinary’ illness or condition.

But because of people like me, I feel we need to see so much more coverage from the press on LQTS and the implications for those living with it.

Relatively unknown condition

Despite all the Irish Heart Foundation and Lucinda’s hard work I still feel that this is a relatively unknown condition. I struggle to understand why. There have been numerous cases of kids collapsing on pitches, being revived or in some cases sadly not.

I guess the lack of media coverage of LQTS was what prompted me to pen this piece for the Irish Heart Foundation. I don’t imagine for one minute this article will shine the media spotlight on LQTS. But I do want to raise the point. It is only my opinion and  I’m not claiming to speak for the LQTS community. This article is just a patient’s voice. Mainly for my daughter but, as it turns out, also for me (remember I mentioned the wrong jigsaw). I have the LQTS gene that affected Sinéad not my wife’s family as we initially thought. But that’s another story. For now, I’ll stick to this narrative, which is the feeling of belonging to something akin to  the LQTS version of the ‘Freemasons.’  We know who we are, the press knows who we are, the general public know who we are,  but they are not really sure what we are .

So back to my original point maybe the name LQTS is not catchy enough for the media. Maybe we need a better title that captures the public’s imagination, allow me to suggest ‘Racy Heart.’

Irish Heart Foundation supports  

LQT Syndrome (LQTS)  is a heart rhythm disorder or condition. LQTS is usually an inherited condition, affecting adults and children. There are a number of different types of LQTS. Different people, even within the same family, may be affected by LQTS with very different degrees of severity.

For more information on LQTS please see here 

The Irish Heart Foundation supports members of our LQTS Support Group with our Nurse Support Line and Heart Support Network Facebook page.

You can join our Heart Support Network private Facebook page here.

Our nurses are available on phone and email support Monday to Friday 9 am to 1 pm. Call 01 6685001 or email support@irishheart.ie