‘There are so many points where I feel I could have died, and every day I question why I’m still here… because I didn’t think I would be.’
Sitting on a bench looking out over the dock in Bristol, Kerrie Kent had told her future husband Tom she had congenital heart disease and she ‘would probably be in for a bit of a rough ride in life’.
‘I told him that was his opportunity to get out now,’ said the now 39-year-old. ‘But it was too late: we were too in love at that point.’
And a rough ride Kerrie has had since – but sadly she underestimated that fact.
The East Sussex resident was born with the condition, which is a birth defect affecting how the heart operates, but was undiagnosed until she was five months old.
‘Despite being pale, having cold legs and feet, bouts of excessive sweating and laboured breathing my mum was repeatedly told by doctors I would “grow out” of my difficulties,’ Kerrie told Metro.co.uk.
After she was diagnosed she had surgery to correct narrowing of the aorta and immediately ‘started to thrive’, and lived a ‘normal childhood’ apart from occasional check-ups.
It wasn’t until she was 28 years old and living in London that things changed after she attended a routine test at the Royal Brompton Hospital.
‘During the MRI scan I could hear them saying that something didn’t look right, and it was immediately obvious that something was seriously wrong,’ said Kerrie, who is now an artist and creative director of her own business, The Brand Studio.
‘I’d had an inclination before that because I’d been getting panic attacks when I was on the Tube, and I didn’t understand why because there were no other symptoms.’
They discovered her aortic valve wasn’t working effectively and was letting blood back into her heart – and it had enlarged to twice its normal size.
Six months later she had open heart surgery to replace it with a pig tissue valve, and then had to have it replaced again with a cow tissue valve in 2015.
Saying she married Tom, 40, in 2013, Kerrie said: ‘Oddly enough, having a baby was something I never really thought about. But I was told at the Brompton my condition would make it difficult for me to carry a baby, and it would need to be pre-planned if we decided that’s what we wanted and I’d have to be under close supervision.
‘I thought, “I bloody well will.”‘
What is congenital heart disease?
According to the NHS, congenital heart disease is a general term for a range of birth defects that affect the normal way the heart works.
The word ‘congenital’ means the condition is present from birth.
It is one of the most common types of birth defect and affects almost 1 in 100 babies born in the UK.
Symptoms, particularly in babies and children, could include:
- Rapid heartbeat
- Rapid breathing
- Swelling of the legs, stomach or around the eyes
- Extreme tiredness and fatigue
- A blue tinge to the skin or lips (called cyanosis)
- Tiredness and rapid breathing when a baby is feeding
These problems are sometimes noticeable soon after birth, though mild defects may not cause any problems until later in life.
After six months of recovery after her second surgery, she was told a board at the hospital would have to sign it off if Kerrie wanted to try and conceive.
‘The concern was that my heart wouldn’t be able to cope with the strain of a nine-month pregnancy and it could be a risk to my life,’ she explained.
‘I got hysterical at that point because I had to wait for a green light from all these medical professionals to go off and get pregnant.
‘I had high blood pressure throughout my pregnancy which I was medicated for and meant my baby was born smaller than he would have been normally.’
She welcomed son Walter, now 5, after what she said was a ‘horrible time’ during which she had to battle to be allowed to have a caesarean section.
‘I got little Walter out of it in the end and he’s perfect,’ she said.
‘Everything was going well, and I loved being a mum. We bought a house, did it up and sold it and then bought a bigger house to renovate.’
But in May last year Kerrie said she ‘got really, really sick’ and 2021 became ‘the most traumatic year’ of her life.
‘The first I knew was that I was presenting to potential new client and suddenly I started to slur my words,’ she said.
‘I told myself to keep sipping my drink and I’d be okay. Then I felt breathless like someone was stepping on my chest.’
When she got home, she called her husband to tell him something was seriously wrong.
‘Deep down I knew I was dying, although I didn’t tell him that,’ she said.
Kerrie had a very high temperature which led to medics thinking she had coronavirus – but the next day Tom took her to A&E at Tunbridge Wells Hospital in Pembury.
It was then doctors found she had sepsis caused by infective endocarditis, a rare and potentially fatal infection of the inner lining of the heart. Her organs including her bowels and liver had started to shut down.
‘A skin bug had got into my bloodstream from a small cut somewhere,’ Kerrie said. ‘The bug went straight to the weak part of my heart which is the replaced valve and sat on it. It basically destroyed my heart.
‘I was told it had been going on for up to two months without me knowing.’
Kerrie was told her only chance to survive was to undergo very risky surgery – which left her saying goodbye to her family.
The operation took 19 hours, and a vein was taken out of her left leg to put into her heart which has left Kerrie disabled.
Her surgeon said ‘he’d never seen such an infected heart before’, Kerrie added.
Her chest was open for four days, she was in an induced coma for 20 days and then in hospital for three months.
As she slowly emerged from her coma, her husband Tom told her, ‘You need to come back to us now.’
Kerrie said: ‘And from that moment on, I did.
‘I had to relearn to speak and walk and use my hands again… it was horrific.
‘At that point in hospital when I was going through this, I just didn’t think about the fact I had a child, because my body was just preserving its energy for the vital things. I still feel guilty about that.
‘I don’t even think the doctors and the surgeon could believe that I had made it…because I couldn’t.’
Although her kidneys have been left badly damaged, operating at 36% of their maximum function, doctors are ‘very happy’ with the condition of her heart at the moment.
‘I haven’t asked about what the future holds because I’m scared to hear the answer,’ Kerrie added. ‘I know it’s taken years off my life though.
‘Right now I feel really good although I have PTSD because of what I went through last year.
‘I call it “getting stuck in chapters”. On any day I can get stuck in any chapter of that journey and I’m reliving it.
‘Other days I focus on the here and now. It’s a constant challenge.
‘But I’m just happy to be alive and my goal is to be a mummy for as long as I can.’
While going through her ordeal, Kerrie launched a set of merchandise to raise money for the British Heart Foundation (BHF) and the Brompton, which includes a set of enamel pins engraved with the word ‘brave’.
She has since been nominated for the innovative fundraiser award at this year’s BHF’s Heart Hero Awards in December, which Metro.co.uk is the media partner for.
The British Heart Foundation Heart Hero Awards 2022
A BHF Heart Hero, with Metro.co.uk as its media partner this year, can be anyone from a healthcare professional doing exceptional work, to a young person living with heart disease that has shown incredible courage and determination, to an inspiring fundraiser who has found creative ways to help fund research.
Those shortlisted will be invited to an awards ceremony in London on Thursday, December 1, when the winners will be announced.
Scottish footballer Scott Allan and TV and radio presenter Will Njobvu are among this year’s celebrity judges, and Vernon Kay is the host.
There are eight categories you can vote for including Young Heart Hero, CPR Hero and Innovative Fundraiser.
The awards ceremony raises awareness of the continued need for funding for the pioneering research that is turning science fiction into reality, and providing hope for more than seven million people in the UK living with heart and circulatory conditions.
To find out more about the categories or to make a nomination, visit the British Heart Foundation website.
Entries close on May 31, 2022 at 5pm - but certain categories remain open all year round. Good luck!
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