Belfast Telegraph

Saturday 12 July 2014

From life-saving op as a baby to more surgery, nothing can stop teenager Chloe

No mountain high enough: From a life-saving op as a baby to more surgery in two years, why nothing can stop teenager Chloe Fisher reaching for her dreams

Chloe Fisher
Chloe Fisher

It's impossible to imagine the emotion Brenda Fisher and her husband John felt as they buried their baby girl in the same week their 15-month-old daughter faced a battle for her life on the operating table.

Eleven years on, and the trauma is still there for Brenda, who fights tears as she recalls that deeply traumatic weekend in April 2002 when her baby Alana was stillborn, just two days before her daughter Chloe faced heart surgery.

"We also had a three-year-old at home who had no idea I had given birth to her sister, and we were trying to be brave for her as well," says Brenda.

"We didn't know what we were going to be faced with next. We didn't know if we were going to be opening a grave again that week."

Brenda (42) a dental nurse and John (51), a marine engineer from Kilkeel also have a 16-year-old daughter Natalie and a son Johnny, who is 10.

Chloe, now 13, is a beautiful and talented teen who has never let the fact that she has a serious heart condition hold her back.

Remarkably she has never missed a day at school and is top of her class in Kilkeel High School.

She is passionate about drama and music and her mum describes her as a very bubbly girl who just loves good craic.

But before her surgery at 15 months, Chloe's life had hung in the balance.

She was just a few hours old when an observant midwife saved her life, when she noticed that her colour wasn't as healthy as it should be.

Brenda recalls how her world imploded very quickly after that: "I thought I had a healthy baby. She wasn't even a day old when that midwife came on duty and took one look at her sleeping and told me she didn't like her colour.

"She took her down to special care straight away. I owe everything to that midwife, as she saved Chloe's life.

"Shortly after she took Chloe to special care, I was told that she was being transferred to the Royal Victoria Hospital by ambulance.

"They said she was so ill I couldn't go with her in the ambulance, as she needed to have a doctor and nurse with her, and they warned us that she might not survive the journey.

"The next few days were just a blur. It was as if I wasn't there, it was like being in a dream, or a nightmare."

Tests showed that Chloe had Fallot's Tetralogy, a condition which means there were at least three separate faults in the heart. Chloe had eight faults in both her heart and lungs.

She needed surgery urgently, but because there were no beds available in intensive care, it was 10 days before she was able to undergo a life saving operation.

It was an agonising wait for Brenda and John, who had no choice but to watch as their fragile little daughter's life started to slip away.

"Natalie was only three, so we had to go home to be with her," recalls Brenda.

"We kept getting phone calls to say Chloe was slipping away. It was coming up to Christmas and I just thought she was going to die.

"Then when she was 10 days old she had surgery to put a stent in her heart. She was in intensive care for a couple of days and we got her home on Boxing night.

"That was extremely difficult, because we had no health visitor or community nurse and it was very, very hard work because she was so ill.

"She was on a lot of medication and, thankfully, she was always a strong wee thing and even though she was really poorly, she pulled through."

Chloe's condition is the most common cause of blue baby syndrome, which makes the skin turn blue because of a lack of blood oxygen.

It is thought to be caused by environmental or genetic factors, or a combination of both.

Over the coming months, Chloe became bluer in colour.

It was April of 2001 when she was finally considered strong enough to have surgery to repair her damaged heart.

It was an operation which was not without risk and just a few months earlier, a child who Brenda and John knew, had not survived the same procedure.

At the time, Brenda was coming to terms with another devastating blow.

Pregnant with her third child, she was shattered to be told there were serious complications with her unborn baby, whose liver and bowels were not developing normally.

She says: "I wasn't well myself during the pregnancy and then we were told that the baby's liver and bowels were outside the body.

"We had the option to terminate but we didn't want to do that.

"We were then told the baby would probably need a liver transplant.

"I remember I was 20 weeks pregnant in April when we got a call on the Friday to say that Chloe was going in to the Royal on Monday to prepare for her surgery on Tuesday.

"The next day I went in to early labour and gave birth to a wee girl on the Saturday night, who was stillborn.

We buried Alana on the Sunday, in a service with just John and me, and I was just devastated.

"The next day, Chloe went in to hospital and on the Tuesday she spent eight hours in theatre.

"We knew a wee fella who had been through the same surgery in January and who didn't make it.

"That eight-hour wait was just horrendous ... it was so terrifying."

Chloe made it through surgery, and Brenda will never forget going to see her in intensive care, surrounded by tubes and drips.

For the first time, the Fishers noticed their little baby girl had pink fingers and toes.

She woke after just two days and her first word was mummy, the first time she had ever spoken it, and it melted Brenda's heart.

Again, her strength pulled her through and she was able to go home a week later.

Brenda says: "She is such a wee fighter. You just need to know Chloe to understand how strong she is.

"Looking back, it was a nightmare, and we only got through it because of good family and friends who supported us. Heartbeat NI was also just fantastic to us."

At primary school, Chloe often needed a nap because her brain wasn't receiving enough oxygen from her heart and lungs.

As a result, she would also have to go home early, but no matter how unwell she felt, she always insisted on going to school.

Chloe will need more surgery in two years when she has stopped growing.

But she is determined to live life to the full.

Brenda struggles with guilt and has constantly asked why Chloe was born with the condition and feels it is so important to find the cause.

It's why the new research being conducted in Northern Ireland is something which she has welcomed.

"I just ask the question so many times: what did I do wrong? I just feel so guilty for Chloe.

"I feel it's been my fault, and I would just love if they could find out what causes this problem.

"It would be great for mothers-to-be to know what to do or what not to do and I just think it's super that this research is going ahead. It would be miraculous if they found a cause."

CHLOE'S STORY

Chloe is a brave and independent teen who has always been determined to live her life as normally as possible.

Although her heart condition means she cannot participate in sports, she has more than made up for it by pursuing other interests, especially in drama and singing.

She is currently studying for her Grade 5 exams in both singing and drama and was delighted to get a role in her Kilkeel High School’s Christmas production playing one of the daughters in Fiddler On The Roof.

A big fan of One Direction she was sad to miss out on seeing her idols in concert when they visited Belfast earlier this year but says when the boys come back to the province she and her friends will be first in the queue for tickets.

She naturally feels some apprehension at the thought of having major heart surgery in two years’ time but just like her mum says, Chloe is an incredibly strong and brave little girl.

“Having a heart condition has made me more determined to push myself harder to try and fit in. I don't like not to fit in and so I just try and get on with it. I think if you don't it will only keep you back,” she said.

“It does scare me when I think about the whole process I went through when I was born.

“I was too young to remember although I have been told bits and pieces and I am just so thankful that it worked for me.

“It does scare me about having to have surgery in two years’ time because I know it is risky but I just put it to the back of my mind.”

Chloe has such an appreciation of the medical support she has received since birth that she plans to pursue a career either as a doctor or in nursing.

“I want to do something with medicine because I grew up in a hospital environment with all my check-ups and through my experience, nurses and doctors do such a good job that I so appreciate it and it has made me want to help other people.”

HOW YOU CAN HELP OUR APPEAL

More than 200 babies are born with congenital heart disease each year in Northern Ireland.

A new three-year research project called The Baby Hearts Study, which launches in Northern Ireland next month, aims to find a way to prevent the coronary disease.

The study, supported by the Chest Heart and Stroke charity, aims to increase scientific knowledge about the environmental causes of congenital heart disease in very early pregnancy, perhaps before the mother even knows she is pregnant.

Scientists have good reason to believe there might be environmental causes of congenital heart disease but they don't know with any certainty what they are.

It is hoped the study will help them to find the causes which would mean that preventative strategies could be put in place.

The study could make Northern Ireland one of the world's leading centres for research into the causes of congenital heart disease.

Chest Heart and Stroke needs £172,000 to fund the study and the Belfast Telegraph has nominated the study for our annual Christmas charity appeal this year.

HOW TO HELP: you can make a donation via www.nichs.org.uk/baby or alternatively telephone 028 9180 2080

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