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“It’s not game over, it’s just a different journey”

Born with a rare congenital heart condition, doctors didn't think Emma-Kate would survive into adulthood. But she's consistently proved the doctors wrong, and is keen to share her hope with others.

Emma-Kate doesn’t remember her first heart event – she was just a week old at the time. But her mother vividly remembers Christmas Eve 1974 when she found her week-old infant blue in her crib.

"It was really weird," says Emma-Kate. "The cat was creating a real racket outside my room and so Mum went in to see what was going on and I was blue. That’s when they discovered I had gone into cardiac failure."

Emma-Kate was rushed to hospital in the Hawkes Bay and then flown to Greenlane Hospital in Auckland.

Her parents were told that their daughter had a rare, life-threatening condition called Truncus Arteriosus, which meant the structure of her heart hadn’t formed correctly.

Repair surgery was successfully carried out a couple of weeks later by pioneering New Zealand heart surgeon Sir Brian Barratt-Boyes. The family then remained in Auckland for six months before the medical team were happy for them to return home.

Primary school years with a heart condition

Despite the success of the operation, the heart condition still significantly impacted on Emma-Kate's early years.

"I was just really unwell, always tired and run down,” she recalls. “If someone got a cold, I got it really badly. I couldn’t run around like the other children. I was always last in sports if I was able to do it. So I spent the childhood pretty well being left out of the physical side."

She also missed a lot of school with hospital appointments and migraines (a common side effect of her condition).

"I think it was quite isolating, but I didn’t really realise it then," Emma-Kate says. "Looking back, it was just kind of normal to be the odd one out."

Further heart surgery

Emma-Kate's health slowly deteriorated until, at the age of 10, she returned to Greenlane for further surgery.

"The surgery went well until I was in ICU (intensive care unit) and everything ruptured. We had to go back in and apparently I flatlined on the operating table," Emma-Kate says.

Although she was successfully resuscitated, the doctors warned Emma-Kate’s parents at the time that she was unlikely to make it to adulthood.

"We were told that it would buy us a couple of years, maybe five if we were really lucky."

Not surprisingly, the uncertainty of her future was stressful for the young Emma-Kate.

"There was a lot of anxiety for me, I was always being told that I was pretty sick and that I wasn’t going to live," she recalls. "I remember sitting in one appointment, I can’t remember how old I was, but Mum was brave enough to ask if I could ever have children. I was told I couldn’t have children, that I wouldn’t be able to carry them and the likelihood is I wouldn’t live old enough to have them anyway."

Impact of heart condition on self-confidence

The condition also had a negative impact on her self-confidence as a teenager.

"Going through my school life I always felt really different, left out. The main thing was at swimming, being a teenage girl with a big scar down her chest and legs. I was really embarrassed, I always wore high tops until my twenties. I was the girl with the scars, it set me apart."

It also had an impact on her social life.

"I remember at about 16, all my friends wanted to go out and party and not being allowed to. Mum sort of wrapped me up in cotton wool," she says. "If I did go out, my friends could stay out much later and get up the next morning and be fine, but I was really exhausted. The normal things that all the other teenagers were doing, I just couldn’t do."

However, proving the doctors' predictions wrong, she made it through her teenage years and reached adulthood.

A change of heart

When Emma-Kate turned 21 she decided things had to change. If she was going to die young, as the doctors kept telling her, she wanted to do some living first. Much to her parents' horror she took off overseas and spent five years travelling around the world.

It wasn't without its health challenges. She came down with glandular fever in Africa and spent a long time very unwell in hospital. What's more, the typical Kiwi backpacker lifestyle in London probably didn’t do her body many favours.

"I partied with friends and drunk too much, but I was told that I was going to die so I kind of decided I would go out with a really big bang and have a really good time."

After a final stint of travelling in Bermuda, where she met her now ex-husband, she returned to NZ.

Proving the experts wrong

Emma-Kate's travels had given her a new attitude towards exercise and life in general.

"I had worked out I could exercise but just had to build it up to it in little bits. I did the Wellington half marathon just to tell my cardiologist I could do it," she says. "It was a really slow build up to be able to do that. I worked out heart wise that I can build up my stamina very slowly."

She also proved the doctors wrong about children. "I was told I couldn't have any children but I tried and ended up with three!"

Her first pregnancy, at the age of 30, was monitored under the cardiology and gynaecology teams at Wellington Hospital. Ill with constant morning sickness and with her heart struggling to cope, Emma-Kate gave birth to her first child Warner, a healthy baby boy, at 34 weeks.

Second pregnancy brings "confronting" news

During her second pregnancy, Emma-Kate was faced with some confronting news. At her 18-week scan she discovered that her unborn child had tetralogy of Fallot (a congenital heart condition, which in some cases is genetic).

Rossi was born at 34 weeks and spent a bit of time in neonatal care before going home. He had his first heart surgery at Starship Hospital at 10 months of age.

Emma Kate found it a challenge to be in the situation her mother had been in 30 years before. "I had been through it and so I knew what all the machines were, I knew all the tests, I knew his team was my team so in some ways that made it easier, but I also had too much information," she says. "I knew what could go wrong and what couldn't go wrong."

It was a very stressful time for the family and for Emma-Kate there was an added challenge to deal with.

"I felt a huge amount of guilt that it was me that had passed it on, so there's always that whole guilt factor.

Emma-Kate needs further surgery.

While looking after her two young children, Emma-Kate’s own health started to go into decline and her doctors told her she needed further heart surgery. However, before the surgery was carried out she became pregnant with her third child.

"I was actually told to abort her because I needed heart surgery, but I made the decision to put that off. So I went through another pregnancy of being very sick, very tired, but I managed to get her to 35 weeks."

Once her daughter was safely delivered, Emma-Kate then underwent a "melody procedure" to repair her failing heart valve.

"They go in through your groin and put another valve inside an existing one. So they don’t have to go in through the chest, they can add them like Russian dolls."

It was only the fifth time the surgery had been carried out in New Zealand, so it was still considered experimental.

"Unfortunately for the first six months I thought I had done the worst thing ever, I had really horrible heart palpitations and felt like my head was going to explode until the pressures sort of equalled out. But I have had that in for nine years so I have done really well."

More recently she's had a catheter ablation to help reduce the arrhythmias she'd been getting.

"Unfortunately during that operation, because I'd had so many catheters as a baby my femoral artery started to collapse so in the end I had a leg bypass. So that was pretty major, but if I didn’t do that I would have possibly lost my leg so we needed to do that."

Living life against all odds

Emma-Kate knows she’ll probably face further surgery in the future but in the mean time she’s continued to defy expectations.

"I have done far better than I should have, I am still here and all my surgeries have lasted a lot longer, like the valve that was put in in 1985 is still there and that was only supposed to buy me a couple of years and the melody valve has been in for nine years now and that was supposed to last two or three."

She also remains under close monitoring from her medical team.

"Every year, I have an echo, an ECG and everything is monitored very closely. I have just learnt mindfulness which has been really helpful and I have changed my diet. I try and exercise, I get lots of sleep and I've sorted of worked out what I need to keep going. I'm on no medication."

As well as keeping her body healthy, she’s also worked to stay strong mentally, which hasn’t been without its challenges.

"My son had a stent put in a couple of weeks ago at Starship," she says. "When I went back on the ward it kind of all comes flooding back so I think it is something that never leaves you but as I said I use my mindfulness and various tools and it is really hard watching a child go through that."

Now she's watching him deal with the same challenges that she herself faced as a child.

"He is going through quite a lot like I did,” she says. "He gets very tired, he can't keep up with his peers in sports and when he gets a little bit tired he gets clumsy. He has post-traumatic stress and a needle phobia and he is quite anxious, he is not a very good sleeper and he is quite clingy to me at times. I guess that is what I went through as a child, but back then we were told not to talk about it, you just kind of got on with it."

Meeting other with the condition

Living with such a rare condition, Emma-Kate does not get to meet many others with her condition.

"There are a couple of truncus people around the world that I speak to online, there are other heart people that I know but not with my same condition and that is quite good,” she said. “It is really interesting, I have got quite a positive outlook and I am quite grateful and quite positive about it, whereas some of them are a bit doom and gloom. I have got this far so I’m pretty determined to get further."

She hopes that by sharing her story, she can give hope to others living with a congenital heart condition or to parents of children with heart conditions.

"Partly why I am speaking out is to give some parents some hope and other adults too that you can lead a relatively normal life, it is just a new normal, you find your new normal.

"I think my key point is that you have got to be grateful. It's a mental thing as much as a physical thing, if you can get your mental attitude right then that helps. You have got this heart condition but if you actually look after yourself and do all the right processes and listen to your cardiologist, exercise, eat well and sleep and do some mindfulness or do whatever works for you, then you actually get to have a far better quality of life. It is not game over, it is just a different journey."

Shared August 2019

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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  • Alice 27 October 2020

    Hi Kate, thank you for sharing your story, I have not actually connected with anyone with this condition with it being so rare, and I happened to be looking online. My son also has Truncus Arteriosus. He was diagnosed at birth and has had 3 operations for shunt and valve replacements at 2 weeks, 6 months and his last op was 4 years old. Despite his heart condition, he has led a normal healthy life and I have been careful with his diet etc..however instead of sports he excelled in Music, playing piano and clarinet. He is now a healthy 19 year old attending University and is doing very well. We still have to go regularly to his cardiac appointments to monitor his artificial valve which would need a replacement in a couple of years time. Thanks again for your story, it is good to know that someone else has Truncus Atreroisus in order to know what you went through.

  • Merys 17 October 2020

    Emma Kate, your story is similar to my Mum’s. Like you, she wasn’t expected to live beyond her teenage years, let alone have children. She proved everyone wrong by having three of us before her first heart surgery, then had two more kids after. Mum died 7 years ago at the decent age of 84. She did it, you can too. Well done, Emma Kate.

  • pat 16 October 2020

    I have congenital heart failure and my husband has angina, makes for interesting and sometimes challenging times. Added to this I have arthritis throuout my body and am not allowed to do weight bearing excercises, however we manage, I can walk with a rollator and, at 72 I think that I managed quite well. So I can empathise

  • Ruth 14 October 2020

    I have just read Emma Kate’s story.  How wonderful to follow her travels with a dicey heart.  Loved it.
    I lost a son when he was 3 weeks off 52.  He was enjoying a life with his lovely wife and two sons, 25 and 21 when he had a heart attack and was gone in about half an hour.  This was ten years ago and seems like yesterday.  The unexpected shock dealt us all a dreadful blow as he had so many plans to be fulfilled.  Now I can feel for those who go through this dreadful experience. The loss is beyond belief.
    So pleased to be a part of your team and love the newsletters even tho I am 89 years young.
    Ruth Munro

  • Darren 22 November 2019

    Wow you are amazing kate. Such a great achievement making it so far and bringing children into the world. Wish you much more joy and plenty of years. I will be posting my story up soon but not as brave as yours.

  • Clare 17 September 2019

    It was very moving to hear your story Emma, totally claimed by you in all its pain and glory. We are so proud of you and your strong, wise, feisty, compassionate heart.