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29th October 2014

I was six years old when I got my pacemaker

When Maria was told that she needed a pacemaker she had no idea what that word meant.

“I was six years old, so I did not understand very well what I needed it for”. At the age of twenty, Maria got the first digital pacemaker implanted in Spain. She is now 25, lives in Salamanca and will become a doctor in a few months’ time. And you would never guess her story.

“a weird murmur coming from my heart…”

“I was born on the 11th of October of 1989 in Leon, Spain, after an apparently normal 39-week pregnancy and birth. But then doctors heard a weird murmur coming from my heart, and did some tests in which they found a peculiar malformation. It turned out to be the so-called Transposition of the Great Arteries (TGA), which prevents the blood from getting the oxygen it needs because of the way the arteries are inserted in the heart: the one that needs to connect with the right ventricular exit connects with the left one instead, and vice versa”.

Maria’s description is very technical: on the one hand, she is in complete peace with what she’s gone through; on the other hand, being in close touch with doctors and hospitals all her life has grown on her and she’s now on her way to become a doctor.

“My arteries were upside-down”

“… sometimes, a negative plus a negative can equal positive…”

“My arteries were upside-down”, she explains. Normally, this is a death sentence for a newborn. But, sometimes, it comes with other problems that balance each other’s effects – sometimes, a negative plus a negative can equal positive. And this was the case for Maria: “I was lucky enough to survive thanks to certain disorders associated with TGA that would keep me alive”.

Because in Leon they couldn’t offer adequate means for her follow-up, the five month old Maria was sent to a hospital in Madrid with a long history of treating this kind of issue. Since then, she’s had check-ups every six months, which have included thorax radiographies, echocardiograms and electrocardiograms. “Even if my symptoms were mild, a future surgery to correct the problem was planned from the start”.

In May 1996, the surgery finally happened. She was six years old. The operation aimed to make Maria’s heart work properly even if its ventricular functions were opposite to those of a normal heart. In a normal heart, the right ventricle is responsible for lung circulation (blood without oxygen) and the left one deals with systemic circulation (blood with oxygen). Were the operation a success, Maria’s heart would, exceptionally, behave the other way around. In other words: her right ventricle would be responsible for systemic circulation (blood with oxygen) and the left one would do for lung circulation (blood without oxygen).

“The memories I have of that time are rather blurry, but I remember I wasn’t scared”

However, something went wrong: a complication in surgery caused a complete blockage; and that was when doctors decided to implant a pacemaker. “The memories I have of that time are rather blurry, but I remember I wasn’t scared”, she says.

But this life journey goes beyond what happened inside of the hospital: going back and forth from Leon to Madrid meant an eight hour commute every time, and also meant missing school periodically. Maria’s parents were exhausted, too, although this was by far the easiest part of the whole process.

“My parents suffered a lot in the beginning because they didn’t expect this, and also because I was the youngest kid of the three, and the only girl. The hardest moment for them was when I first went into surgery at the age of six, which was the biggest intervention I’ve gone through. But we’ve always been very well informed about my pacemaker and prepared for whatever would come. They were so nice to us that going to Madrid eventually became just part of a normal and manageable routine”, she explains.

Life after the first procedure followed a very normal course for Maria. “I have gone through three more surgeries, when my pacemaker battery had to be changed”. The last time was in 2010, which she says has made her life much easier.

Goodbye Madrid

It involves two radical changes. The most important one is that she does not need to go to the hospital to get checked anymore: sending her cardiac information to the doctors by phone every month from her student flat share in Salamanca is all she has to do. She does this via a receptor that she places on her skin which then connects through a wire with the telephone line.

Secondly, thanks to this pacemaker, Maria can now have an MRI if she ever needs to; something someone with a traditional pacemaker could never do. She’s never needed one, but knowing that she could eventually have it makes her life even more normal.

“I have always had a normal life, except from not being able to ride rollercoasters or walk freely through airport security controls”

She knows she will always need a pacemaker, but she feels that it doesn’t change much about how she lives her life. “I have always had a normal life, except from not being able to ride rollercoasters or walk freely through airport security controls”, she jokes. Apart from that, she has been able to play badminton, basketball and football.

Now, only a chest scar gives a hint of what she’s gone through. And she feels lucky. “In spite of possible complications that may arise in the future, I have no words to express how grateful I am to the hospital, the doctors, the nurses and everyone who has supported me in such an easy and fun way even when times were difficult”.

“When I was little, I used to go to the hospital with the thrill of going someplace where I never felt unhappy, despite of what I went through: I grew up in rooms covered in cartoons, with doctors and nurses who always had a smile for all the kids who were there. I met people from many places and sang songs with nurses who had the patience to sit by my side after every surgery and made it their mission to make me laugh.”

Once she turned 18, Maria left that one hospital behind and entered “the real adult world”, as she calls it, where she says that she’s still treated with “absolute dedication by the hospital staff, even if the rooms don’t have Disney wallpaper anymore”.

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Photo credit: Fotolia

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