Teenager, 15, born with ‘half a heart’ needed a pushchair until she was NINE because she was too exhausted to walk
- Amber Harrison was born with the main valve of her heart underdeveloped
- She required three surgeries, starting at one day old, but is still affected now
- Exhaustion has left her missing school and playing with her friends
- She struggles to stay warm meaning she wears ski coats before it’s winter
- Mother Zoë Harrison said Amber is often mistaken for having ‘teenage tiredness’
A teenager born with ‘half a heart’ needed a pushchair until she was nine years old because she was so exhausted.
Amber Harrison, now 15, was immediately taken away for tests when she was born blue in colour due to a lack of oxygen.
She was diagnosed with a heart condition called pulmonary atresia, where blood cannot flow through the body because the heart’s main right pumping chamber has not developed properly.
It came as a complete shock to her mother, Zoë Harrison, 44, of Southend-on-Sea, who had enjoyed a text book pregnancy.
Amber has since had to have three surgeries, including one when she was just a day old when doctors put a shunt in her heart.
Due to her condition, Amber gets so tired she can only manage a couple of days at school and gets so cold she has, at times, had to wear a ski coat to stay warm.
She can walk less than a mile before coming breathless – and no longer wanting to use a pushchair, her parents drive her everywhere.
Currently waiting to see if she can have another operation, Mrs Harrison said her daughter is determined to succeed and said: ‘She is my inspiration.’
Amber Harrison, now 15, was taken away for immediately taken away for tests when she was born blue due to a lack of oxygen. Pictured not long after birth
Amber was diagnosed with a heart condition called pulmonary atresia, where the heart’s main right pumping chamber has not developed properly
Amber needed a pushchair until she was nine years old because she was so exhausted. Pictured, in hospital aged eight having a checkup
Mrs Harrison added: ‘If I had this diagnosis, I’d just want to be in bed all the time, but Amber is determined to live life to the full.’
Although Amber is desperate to attend school and study, it has not always been possible for her due to her sheer lack of energy.
Mrs Harrison said: ‘We’ve even been threatened with a fine at school if her attendance doesn’t improve, which we find shocking.
‘She’s only able to do a couple of days a week at the moment, but she’s still a high achiever.
‘The biggest frustration for her, though, is people not taking her seriously, and thinking she doesn’t know what she’s talking about when it comes to managing her condition because she’s a child – when really, she knows better than anyone.
WHAT IS PULMONARY ATRESIA?
Pulmonary atresia is a condition where blood cannot flow between the right pumping chamber (right ventricle) into the lungs to pick up oxygen.
Often, this is because the large blood vessel that carries blood to the lungs (the pulmonary artery) hasn’t developed properly, and the right ventricle is smaller than usual.
The valve linking the right ventricle and the right filling chamber (atria) may also be narrowed or closed.
Pulmonary atresia is a form of congenital heart disease – a term used to describe a problem with the heart’s structure and function due to abnormal development before birth.
These have a range of symptoms, which include:
- Excessive sweating
- Extreme tiredness and fatigue
- Poor feeding
- Rapid heartbeat and breathing
- Shortness of breath
- Chest pain
- A blue tinge to the skin (cyanosis)
‘They’ll think it’s just teenage tiredness, or encourage her to push herself that bit harder when really, she knows herself, and when she says she’s exhausted she means it. She will literally have to rest for hours, not speaking, not moving – nothing.’
Mrs Harrison, who works for a train company as well as her husband, Lance, 48, had no warning signs of what was to come during her pregnancy.
Born cyanotic – or blue – due to lack of oxygen at Southend University Hospital, Essex in January 2004, Amber’s fragile state at birth was a complete shock.
Mrs Harrison, also mother to Vaughan, 11, said: ‘I had been in labour for hours and had haemorrhaged blood, so was in and out of consciousness.
‘My memory is still quite hazy, but I remember being convinced that she wasn’t going to make it, and panicking that she didn’t have a name.
‘I said to Lance, “We can’t let her go without one”. It was so shocking that I don’t think I properly processed it.’
Later that day, Mrs Harrison was wheeled down to see Amber in neonatal intensive care, where she was hooked up to all sorts of machines.
From there, Amber was transferred to the more specialist Royal Brompton Hospital in west London, while her mother was forced to stay behind recovering.
She said: ‘I could hear all these other parents with their babies on the ward that night. By the morning, I was absolutely desperate to get over to Royal Brompton to see Amber.
Amber’s mother, Zoë Harrison, had no warning signs of what was to come during her pregnancy. Amber pictured with her father, Lance Harrison, in intensive care
Born cyanotic – or blue – due to lack of oxygen at Southend University Hospital, Essex, in January 2004, Amber’s fragile state at birth (pictured) was a complete shock
Amber has had to have three surgeries. Pictured, age six in hospital with a virus
Mrs Harrison said Amber is often mistaken for having ‘teenage tiredness’. Pictured together
‘Lance and I arrived there that afternoon and that was when we were given the official diagnosis.
‘What Amber has essentially means that she has half a heart. But every case is different, so it was hard for doctors back then to predict the outcome.
‘I was given all these leaflets to read to find out more, but I just wasn’t ready.’
Pulmonary atresia is a defect of the pulmonary valve, which is the valve that controls blood flow from the right ventricle to the main pulmonary artery. It develops in the womb.
Around one in 180 babies in the UK are diagnosed with a heart defect at birth – an average of 12 per day. One in every 7,700 babies born in the US each year are born with pulmonary atresia.
There are two types – pulmonary atresia with intact ventricular septum – which Amber has – and pulmonary atresia with a ventricular septal defect, which is a hole in the wall that separates the two lower chambers, or ventricles, of the heart.
In Amber’s condition, during pregnancy, very little blood flowed into or out of the right ventricle and therefore it didn’t fully develop properly and is small.
The heart can have problems pumping blood to the lungs and the body and the artery which usually carries blood out of the right ventricle. The main pulmonary artery remains very small since the pulmonary valve doesn’t form.
At just a day old, Amber had a shunt fitted to enable more blood to flow between her heart and lungs – staying in the Royal Brompton for the next three weeks, where she appeared to be thriving.
At 11 weeks, she returned for her next operation – a balloon valvuloplasty – where a hollow tube known as a catheter is inserted then heated to burn a small hole in the blocked valve.
At just a day old, Amber had a shunt fitted to enable more blood to flow between her heart and lungs. Pictured with her family, mother and father Mr and Mrs Harrison, and brother, Vaughan Harrison, 11
Amber had her third – and, to date, final – round of surgery aged seven, to remove her shunt. Pictured before the operation in hospital
Mrs Harrison said her daughter was very sociable growing up but struggled to keep up with her friend. Pictured on her ninth birthday
Next, using X-ray pictures for guidance, a small balloon is put through the hole and inflated to stretch the valve open, before being deflated and removed.
Amber had her third – and, to date, final – round of surgery aged seven, to remove her shunt.
Growing up, Amber’s condition meant that her energy levels could rapidly decline, and she also struggled with the cold.
Mrs Harrison said: ‘She’s very sociable, but when her friends came round, she would tire quickly.
‘She also needed a pushchair until she was about nine. I’d get all sorts of looks and comments. I don’t blame people, as they didn’t understand, but so many people said to us, “Why don’t you get out and walk?”‘
Amber was off school intermittently from March – July 2017 then full time September 2017 – April 2018 when she attended school three mornings a week.
Since September 2018 she has been going in as and when she can manage, Mrs Harrison said, keeping up with work with a small study group of friends.
Mrs Harrison said: ‘Where she’s sensitive to the cold as well, she’d be in a full ski coat every year before the rest of us had even started wearing jackets.’
For a long time, Amber was ‘in denial’ over her condition, according to Mrs Harrison, who said her girl just wanted to be treated like everybody else.
But all that changed in August 2018, when she attended a weekend trip with charity Little Hearts Matter, who have been supporting the family since Amber was five.
Growing up, Amber’s condition meant that her energy levels could rapidly decline. Pictured in hospital having an exercise tolerance test, aged 13
For a long time, Amber was ‘in denial’ over her condition, according to Mrs Harrison, who said her girl just wanted to be treated like everybody else. Pictured together recently
Currently waiting to see if she can have another operation, Mrs Harrison said her daughter is determined to succeed. Pictured, the family together
Mrs Harrison said: ‘That was a real turning point. She really bonded with some of the other children.
‘The change in Amber’s confidence has been amazing. She now has the power to say, “No, I’m tired” and accept when she needs to replenish her energy levels.’
Now, though there is no cure for Amber’s condition, she is currently waiting to hear if she needs more surgery, after a period of struggling with exhaustion.
She is sharing her story as a new survey by Little Hearts Matter has revealed that young people living with ‘half a heart’ feel let down by society, with 47 per cent saying feel isolated and left out of activities.
Some 70 per cent living with anxiety as a result of their condition.
Mrs Harrison, who said Amber dreams of studying international business, said: ‘To look at Amber, you’d never know there was anything wrong. But that can sometimes work against us, as people don’t take her seriously.
‘I wish people knew more about her condition so they would have more respect for what both she, and me as her mum, goes through.
‘Still, I am so incredibly proud of her.’
For information, visit www.lhm.org.uk
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