Unexpected turns: from Heart Arrhythmias to Pacemaker Placement (and back again)

Our story about pacemaker placement and life with it is a brief one. Mostly because the memories of that time are somewhat hazy. I recall feeling lost and defeated. But also, because in the end, it was only a few weeks between the pacemaker saving her life and being switched off.

What kept me going were the reassuring words of her cardiologist at the time: "She can live just fine with a pacemaker." Despite him being calm, simple and straight to the point, my mind was racing with worry. I imagine my face was pale as I looked at him but stared right through. All I could do was keep standing, telling myself to listen (listen!) what he was saying, but hearing only a buzz in my ears.

Hospitalized for one thing, discharged with another

Among all the challenges Emanuela was born with, heart arrhythmias kept us on our toes on a daily basis. One minute she would be fine, playing joyfully, and the next, she would start crying for no apparent reason, losing strength, not wanting to walk, asking to be carried... It was a pattern we knew all too well. Her heart would race uncontrollably. She was having tachycardia.

She could handle this state for some time, but we never waited to see just how long. Without dwelling on it, we would rush to the ER, to have her connected to an electrocardiogram (EKG) and to monitor her closely.

This was not the way to live though. The racing heart had to be fixed. And it's done through a procedure called cardiac ablation.

Long story short (and simplified): instead of destroying a faulty heart impulse, the ablation damaged the regular signal that makes her heart beat. Now, all I can write about it is what we were told: it's a "1 in a million" complication; it has never happened to a doctor performing it (and he does hundreds of them per year); it happened due to our daughters "upside down" anatomy (nothing was where it was supposed to be), and since it's about "nerves," it's kind of "invisible" and damaging the right thing in the wrong place is apparently like walking in the dark. Or at least that's how I interpreted doctors' explanations (after I've had a really long day; thus all the quote marks).

The procedure was supposed to be routine. But, with Emanuela, we are well-trained by now that things tend to take a turn, so we wanted to know every possible scenario; everything that could go wrong. While doctors, well-trained in parents' (over)thinking and anxiety, assured us of their experience, good track record, and the unlikelihood of anything going wrong. We were neither ready nor assured. When I did not get a call as "scheduled," I started worrying something might have gone wrong. When a nurse popped her head into the room, asked if the cath-lab called, and to my "not yet" said "the doctor will come now" and quickly disappeared, I knew - something for sure went wrong.

"You were right," were the first words our cardiologist said, and: "Emanuela is special." There are no words to explain the fear of what he will say next. As he continued speaking, the fear in my chest grew as if each word was inflating it like a balloon. By the time I heard the word pacemaker, I was already broken.

I didn't want her, us, our story, any of it, to be special anymore. I was fed up with 1 in a million. I was fed up with our case ending up in medical conferences, publications, and my baby being a learning moment. (Although, every time all ends well and my brain unfreezes, I find great solace in knowing this pain and suffering of hers has at least some meaning.)

They let me see her and kiss her en route between the cath-lab and an operating theatre. As they transferred her, she was left asleep, under continued anaesthesia. No one was running, but everyone was in a rush. My time stood still. They guided me through the labyrinth of hospital hallways and underground passes back to our room, to keep waiting for another call.

Life with a Heart Stimulator

Everything went well. Now we had to learn to live with a heart stimulator. There were a million questions; the scariest of them - what if it stops working?

Getting a pacemaker has changed my life for the better. It allowed me to have more endurance, without bringing back heart palpitations and heart racing and things like that. It allowed me to have a normal life; to be more normal.
(Tyler Šajdák, a young adult with a Hypoplastic Left Heart Syndrome and Fontan circulation, living with a pacemaker, talked about it all in an episode of Fontan With a Future podcast)

Fontan With a Future

My life, like the lives of so many people living with congenital heart defects, is a medical miracle. For decades, Fontan and single ventricle patients were consigned to permanent sickness and disability. But today, thanks to advances in medicine…

Buzzsprout

At the time, we didn't know anything about living with a pacemaker. We were afraid of it. All of a sudden, she became "machine dependent" and it seemed there was no going back. We were told that the damaged "nerve" of her heart will not recover. I wish I knew someone like Tyler back then; someone to explain it all firsthand - about how there is no pain when carrying a device below the ribcage; about the importance of exercise, but also about how it is better to stay away from contact sports to avoid risking an abdominal injury and damage to the device; about check-ups, tests and increased frequency of monitoring towards the end of the battery, which by the way lasts for about ten years and it has to be regularly surgically replaced, but Tyler says the procedure is fairly simple and a hospitalization is short, in theory.

During a regular check-up, they bring in the machine, a computer, like a giant laptop, connected to a magnet that they stick over a pacemaker. It controls how well the pacemaker's working. They check the battery life, and they check for any palpitations, arrhythmias and things like that. Then they turn it off all the way, to see how the heart is; in case a pacemaker goes terribly wrong, if it dies, would you still survive. So, they turn it off for 10 to 15 seconds, just to get your regular heart rhythm, without the pacemaker. And that's the worst part. I'm about 90% dependent now, so when they'd turn it off, I could really tell I wouldn't make it long term without a pacemaker at this point. My chest would tighten up and I would feel sick again. Just feel terrible. (Tyler Šajdák)

At the time, we didn't know anything about possible problems with wires, such as that they might stretch and pull out of the heart when placed too short into a growing child. We did not know that home appliances in general do not pose a risk (with the exception of an induction hob), but that other things like a mobile phone, headphones, magnets, airport security scan, and metal detectors, etc. can interfere with a pacemaker.

It was only a few weeks... we barely started learning about it, making peace with it, and getting used to a new life, as we saw it, when Emanuela suddenly started behaving strangely at the playground. It looked like an episode of tachycardia, but with a damaged regular signal and with a pacemaker we were told that would be impossible... Just in case, I put my hand on her chest and I was baffled to feel her heart racing beyond countable. Utterly confused, we rushed to the hospital and made everyone there just as puzzled. They gave me a round device, the size of my hand, to hold just above my daughter's upper tummy / lower chest part where she had her pacemaker, while they connected it to a computer and started testing in order to figure out what in the world has happened. After a lot of clicking, switching the device on and off, calling other specialists for consultation, the conclusion was, against all odds (once again) - her heart recovered.

She did not need a pacemaker anymore.

But she did need another cardiac ablation. In due time.