Congenital heart disease: no barrier

When Brenda was born, her parents were told she probably wouldn’t live to the age of five. She is now 61 and still doing things her way.

Now aged 61 and living on a farmlet in Oamaru with her husband, Brenda continues to get the most she can out of life.

“I manage to do most things I want to do. I don’t have anything on the bucket list that I wasn’t able to achieve, because to start with my bucket list wasn’t too huge. You know, my expectations weren’t high.”

In fact, the expectations of those around her weren’t high either. Since the time she was born, Brenda’s family lived with the underlying fear that she could die.

Brenda was born with aortic stenosis in 1955. It was a time when heart-lung machines had not been developed and there were no surgeries for congenital heart disease. Her parents were told that there was nothing that could be done for her, and that she probably wouldn’t survive to the age of five.

“My mother and father brought me home to a family of five siblings and cared for me as best as they could. During the next six years my mother gave birth to another two daughters to finish her family with eight children.”

But while Brenda’s brothers and sisters “must’ve known there was an issue” and closely guarded her from harm, as a child Brenda went about life blissfully unaware of any problem. “Maybe that was an advantage,” she says now.

"If I wanted to do something, I just did it, if I could."

“The first time I noticed I was different was when I was running behind one of my sisters and she stopped in her tracks and said, ‘you’re not allowed to run or else you’ll drop dead!’ And that always puzzled me,” says Brenda.

Life continued on. Brenda started school and her family moved to Riverton, near Invercargill.

“It wasn’t until l was eight years old and I was biking home from school one day that I found I could not breathe very well. I had forgotten my lunch and school was two miles from our house. I became too breathless to ride my bike and I had to walk – pushing my bike – stopping and catching my breath. I was an hour or so late home and my mother was very worried and upset with me.

“I told my mum I couldn’t ride my bike because it was too windy – and this was the calmest day you could possibly have. So mum told me I was telling lies! It was too late for me to return to school that day.”

The next day Brenda’s mum took her to a local GP. “And that’s when my world changed,” she says...

The penny drops – she’s different

The GP did an ECG on Brenda – the first time she’d had one – and arranged for her to be seen in Dunedin Hospital.

It was the start of many trips to hospital – just one of the times Brenda felt out of place and isolated. “It was a time when none of my brothers and sisters were allowed to visit me – no children were allowed in the ward – so they had to stand outside the window and talk to me. Mum wasn’t allowed to be with me, other than visiting hour. So I was left in this hospital on my own.”

That’s where Brenda had her first angiogram – called a catheter test back then. “So I was taken in, knocked out, given angiograms, and mum was nowhere to be seen. It was just very old people and me. I was eight years old. It was very hard, I used to get quite frightened.”

But in addition to hospital stays, including four trips to Greenlane Hospital, there were new rules too: “I wasn’t allowed to go to school for several weeks, and I wasn’t allowed to run, I couldn’t swim, I wasn’t to get excited, I needed to rest in the afternoon. All these things, and well I didn’t obey them all, though I tried. I even had to catch the bus to school (instead of biking with my siblings). Life was really quite difficult,” says Brenda.

But despite the limitations placed on her, there were still things she found she could do, such as sewing, for starters. Brenda finished school aged 16 with School Certificate in four subjects, boarded with her sister in Invercargill and got a job at an accountant’s office. Her cardiologist told her that as she was “fully grown now”, she could do some non-competitive physical activity, such as swimming, cycling and playing golf. “This was great, I bought myself a new purple Loline bicycle to ride to work.”

At 18 she became engaged and was thinking only about getting married when once again she was sent to Dunedin Hospital.

She thought she was going for a catheter test again, but it turned out she was actually getting surgery. At last, something could be done about her heart condition.

Dunedin’s first aortic valve replacement

On October 9th, 1973, Brenda became the first person in Dunedin Hospital to have an aortic valve replacement.

Dunedin Hospital had only just opened its unit a few months earlier, but once again Brenda was too preoccupied with life to completely appreciate the scale of what this surgery meant.

“It was a big deal. I didn’t realise it was such a big thing. I didn’t think there was a risk to me, because I was getting married!” says Brenda.

What’s more, all the details were discussed with Brenda’s mum at the time, not Brenda. “My mother signed all the paperwork and all I was told was that I’m going to have an operation on my heart.”

The operation went well, though her valve always leaked – even from that day, says Brenda. Incidentally, that homograft valve lasted 30 years before needing to be replaced a second time with a St Jude valve, she says. “A doctor said to me recently that that must be a world record for the longevity of a homograft aortic valve.”

Life after surgery

The valve replacement may have been a lifeline for Brenda, but it did not change her physical fitness all that much. Or maybe it did? The thing is “I didn’t really take a lot of notice,” she says.

“If I wanted to do something, I just did it, if I could,” says Brenda, summarising the attitude she’s had to her heart condition all her life.

Her two children are proof that she’s never really let her life be dictated by her heart condition. When she asked her doctors about becoming pregnant, Brenda was told to wait at least two years after her surgery. “I gave birth to my first daughter two years and nine months later.”

Brenda didn’t ask whether she should have a second baby or not, though when she mentioned having a third she was informed that it would not be wise and that she was lucky to have had her two babies. Another pregnancy could be too much for her heart, they said.

Throughout her life, Brenda continued to achieve, despite managing added complications such as heart failure, atrial fibrillation, epilepsy and asthma.

She went on to study dressmaking and would often sew clothes for her children and lovely wedding gowns for family or friends. She completed a Bachelor of Social Science as well as a Master of Social Work so she could pursue her dream career as a medical social worker. 

Defying the odds?

Brenda and her husband have now been married 43 years and have four “wonderful grandchildren”. On their farmlet they grow their own vegies, raise chooks and grow beef and lamb. Brenda still sews and does craft work. She does get breathless doing various chores, but then she will stop to get her breath back, have a rest and carry on.

Brenda knew one other person with congenital heart disease who recently died aged 45. And though she realises she’s one of the lucky ones of her generation, she doesn’t see herself as defying the odds. “I don’t really see it that way. I think I’ve strived really hard to be normal, and that’s what I’ve done.”

Brenda’s not only coped with daily life, raising children, working and studying, but she’s also found a way to enjoy outdoor pursuits – albeit differently to how most people experience them.

For example, she likes bush-walking and would love to go tramping through parts of the country, but instead of walking it, her and her husband have covered some of that territory in a 4-wheel drive that they bought. “So we got way off into the back country, but I didn’t have to walk it,” she says.

“To go kayaking, we have a double-kayak so my husband does most of the work and I have a rest every few minutes,” she says. “He notices when I stop paddling, but he does not mind, we enjoy each other’s company.”

Brenda and her husband also have a love of vintage motor cars and though driving them is hard work, Brenda can still enjoy being the navigator. “I can still win prizes. I can do things on an equal with other people and they don’t even know (about my condition).”

“One of the most fun things I’ve ever done in my life was ride in a bi-plane similar to the Tiger Moth aeroplanes. There was one in Wigram, in Christchurch, so I paid $60 to go for a ride, and it was an open cockpit plane,” says Brenda.

“And it was up into the sky and we did loop-de-loops and also dives, so you felt all the g-forces pulling down on you. And I just went and did that. I didn’t ask. I was much younger then and probably would not do it today.”

Getting on with life

Brenda says she’s sometimes been told by medical professionals that she’s in denial of her heart condition. And if she is, “well I don’t know if that’s such a bad thing at times, as I am able to enjoy life,” she says.

But if anything sums up her attitude to her heart condition, it’s more the fact she doesn’t “put it first”.

“No, I put my family first, and everything else. Because for me it’s just the way I am, it’s no big deal.” However, as Brenda gets older, she’s having to think about the consequences or whether she can manage the things she wants to do, as the recovery from tiredness or illness takes much longer than it used too.

She is no longer the child running behind her siblings and screaming “wait for me” nor the child kept in detention on sports days because there was nowhere else for her to be supervised. Now, if Brenda and her husband want something, they find a way to do it. They think about the problem and do something about it. They’re now looking forward to their retirement and what that may bring for them both.

Brenda continues to get regular check-ups and says Dunedin Hospital has been very good to her. “I was lucky. I was looked after as a little one, and managed to get through to a time when surgery was available.” 

For children today with congenital heart disease, the outlook is much brighter. “It’s an era where very small babies are having surgery and they now have a very good chance of surviving,” says Brenda.

For those children’s parents, she would say: “I think children are smart. They know what they can do or can’t do. Let them follow their dreams, their path. Talk to them and work out ways to achieve their goals and dreams.”

 

Shared November 2016

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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