The doctor who’ll break your heart
Her parents were told she wouldn’t survive because of a critical cardiac problem. Now 10 operations later – and a childhood spent in awe of the doctors who saved her – Carys Allen is a medic determined to help others
WHEN an ante-natal scan halfway through pregnancy revealed their baby had only half a heart, Carys Allen’s parents were told her condition was ‘incompatible with life.’
They were warned that if they continued with the pregnancy their daughter would need several open-heart surgeries, which would only help to manage, but couldn’t fix, the single ventricle defect which occurs when one of the two pumping chambers in this vital organ fails to develop properly.
Fast forward 24 years, and, this summer, those same devoted parents saw Carys qualify as a medical doctor, despite spending a significant part of her childhood in hospital.
‘When people call me Dr Allen it feels so weird,’ says Carys, who is endearingly disbelieving about her own incredible achievement. ‘I’m so excited about starting my first proper job as a junior doctor.
‘Our graduation ceremony had to be conducted over Zoom, because of lockdown, so I tuned in from a laptop, sitting in the garden with my parents.
‘We graduates read out the Declaration of Geneva (the modern version of the Hippocratic Oath).
‘Mum got emotional, a bit tearful even — it’s been a long road and my parents are really proud.’
Carys, a truly remarkable young woman, has encountered — and overcome — numerous obstacles while navigating the long road to becoming a doctor.
The job of the right heart ventricle, which Carys was born without, is to pump blood to the lungs while the left ventricle keeps it flowing to the rest of the body.
Her first open-heart surgery took place in hospital when she was just four days old and involved re-routing some of the blood supply from the left ventricle to her lungs.
A second operation followed when she was just four months old and, by the age of four, Carys had undergone three open heart surgeries – the third of which was the Fontan procedure, which increases the body’s oxygen levels by redirecting blood from the lower part of the body direct to her lungs.
‘I do remember kicking up a fuss on the morning of that third operation, saying I was scared and didn’t want to have it,’ recalls Carys. ‘But my parents were brilliant at calming me down.’
Carys had her final open-heart surgery aged eight and has since needed around six minor procedures to make small changes, such as putting in stents, as well as having check-ups and MRI scans to monitor how everything is functioning.
Inevitably, she missed a lot of school and, aged 14, was expected to get low marks in every subject she was taking for her exams — except the sciences, in which she was on course to get B grades.
She thought she’d probably go into nursing, but then, just as she was about to embark on her courses someone recommended that she aim for a degree in medicine instead. ‘I went to a state school where continuing onto higher education wasn’t the norm and, although I wanted to go to university, I’d never even heard of medical school,’ recalls Carys.
‘I had spent so much time in hospital myself, and can’t overstate my appreciation for everything the doctors and nurses have done for me, so I thought “Why not?”. ‘Throughout my life, I’ve made a point of doing things that other people have said I wouldn’t be able to, and the prospect of becoming a doctor brought out that same determination.’
With a clear goal in mind, Carys threw herself into her revision and surpassed all expectations, obtaining top marks in her exams, enough to secure her a place at universitynto study Medicine.
In 2018, Carys took a year out to study for a masters at Barts Cancer Institute in London — even having a paper published in a respected journal — before returning to university in September 2019 to complete her final year.
As part of her studies, in January this year Carys got to observe an open-heart operation.
‘I was intrigued,’ she says. ‘It was also a little bit emotional, of course, knowing that I was once, all those years ago, on the operating table in similar circumstances.’
While her ultimate ambition is to be a surgeon, Carys wants to specialise in oncology over cardio, which is ‘a little too close to home’.
So much of her life has been spent thinking about heart problems that she would prefer the challenge of focusing on a whole new field of interest.
‘I’ve always made a point of doing the things people said I couldn’t do’
And, given that she spent a chunk of each of the first 11 years of her life in hospital, Carys will have an insight into what some of her sickest patients have to contend with. ‘Hopefully, my experience will enable me to both empathise and relate to my patients,’ she says. ‘For example, I know how uncomfortable it feels to have a cannula inserted into a vein, because it’s happened to me many times, so I will approach it with a particular understanding. ‘I’m also acutely aware of the psychological impact of traumatic hospital stays on children. I certainly experienced anxiety following the operation I had, aged four, and I believe mental wellbeing must be prioritised.’ The main hurdle Carys now faces is reduced stamina, due to low oxygen saturation — which she tries to counter by staying as fit as possible, exercising most days, and she is training for a 5Km race. Her medical finals, she admits, were especially challenging as the physical exhaustion she felt left her struggling to concentrate. She has also had to contend with dyslexia, a condition which was not diagnosed until she was 17.
Today she takes just two~ tablets a day to regulate her system. Coronavirus has, however, brought her ‘hidden disability’ into sharp focus.
While the majority of her fellow medical students stayed close the university campus Carys retreated home where she has been shielding since March.
‘When the pandemic happened, I immediately wanted to volunteer to help. I was like: “Right, sign me up,”’ she says.
‘But my cardiologist told me: “No way are you doing that.”
‘I’m at risk of getting Covid more severely just because the surgeries mean my lungs have been put under such pressure in the past,’ she says.
‘I’ve found it difficult hearing people say it’s only those with underlying health conditions that die from this virus. ‘There’s no “only” about it. People like me are equally valuable members of society, who can contribute as much as everyone else.’
Like others who are currently shielding, she will be free to re-enter the world from the beginning of next month and is due to start her first placement as a junior doctor, in general surgery, at a major hospital, on August 5.
She will share a flat with other young medics and after five months of having to distance herself from all but her immediate family, is excited about the future.
She and her older sister, who is 26, and younger brother, who’s 16, were raised by their parents, Kevin, a rail signal designer, and Lynn, who works in the voluntary sector.
Carys credits her parents with refusing to ‘keep her in bubble wrap’ and treating her just like her sister .
‘Allowing children with serious conditions to take risks is anxiety-provoking for parents, but it does make a difference long-term in helping to normalise the kid,’ she says.
‘They grow up, like me, not being defined by my heart defect but letting it spur me on in a positive way.’
Kevin and Lynn, who are both 56, never doubted their decision to continue with the pregnancy, despite the offer of a termination when they learned about Carys’s condition. But their daughter is keen not to judge other parents who make a different choice.
‘I think, back when I was born, the outlook was more bleak than it is now,’ she says. ‘I was obviously very sick when I was born, and was in and out of hospital throughout my childhood.
‘But, luckily, my surgeries went well and I always bounced back afterwards.’
As well as feeling enormous gratitude to the hospital staff who took care of
Carys, she and her family feel hugely indebted to the charity Little Hearts Matter for its unerring support.
The Allens first contacted the charity while reeling from the results of the 20week scan and were provided with all the information available on single ventricle heart conditions.
That advice and support continued throughout the surgeries, and at each stage of Carys’s development.
‘When I was at school, I couldn’t play tag in the playground with my friends without getting out of breath,’ she recalls.
‘And on sports days it was embarrassing, because I would always come last.
‘Luckily, though, I never stopped taking part — I just had to resign myself to doing badly.’
However, aged nine, feelings of anxiety meant Carys was struggling at school and, to help support the family, she and her parents were invited along to a Little Hearts Matter activity weekend.
‘That weekend away was a gamechanger for me,’ says Carys. ‘There were so many other children there with the same condition that it made me feel normal. After that, my anxiety got a lot better — and I made some really good friends on that trip, with whom I’m still incredibly close to this day.’
She also has plenty of medic friends and is looking forward to being able to socialise with them again as lockdown restrictions ease.
Little is known about the life expectancy of those with a single ventricle heart defect who underwent the Fontan procedure — first performed 50 years ago — but there is every reason for Carys to be optimistic.
‘I still have some worries about how my condition will affect me in the future, which Covid-19 has obviously exacerbated,’ she says. ‘But it’s not something I dwell on, as I try to take each day as it comes.
‘Right now, I can’t wait to start my job and hopefully provide support to others, just as the health service has done for me.’
‘I was not defined by my heart defect — it spurred me on in a positive way’
‘When I was born, the outlook was far bleaker than it would be today’