Girl, 17, plagued by ‘teenage tiredness’ who could not be saved by TWO heart transplants: Grieving mother warns signs of silent killer disease can be easily misdiagnosed
- Maddy Orford had cardiomyopathy, a condition which weakens the heart
- After fainting on a football pitch, she had two heart transplants but both failed
- Now, mum Barbara is encouraging people to sign up as blood and organ donors
- Charity Cardiomyopathy UK says there is a ‘real shortage’ of lifesaving organs
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A beautiful 17-year-old girl who dreamed of becoming a forensic scientist lost her fight for life, weeks after she started preparing to head to university, after her family mistook the signs of her killer disease for teenage tiredness.
Talented footballer Maddy Orford died last August at the age of 17 after two heart transplants failed to treat her heart condition, cardiomyopathy.
She was playing football for her beloved Pinchbrook United in Lincolnshire when she fainted, resulting in a trip to her GP and eventual diagnosis of the heart disease.
Maddy was studying for A Levels at Lincolnshire’s Bourne Academy, with plans of taking a degree in forensic investigation.
Maddy’s mother Barbara Spiller, a 58 year-old marketing consultant from Bourne, said: ‘Maddy had been going back-and-forth to the GP, but we all just thought it was teenage tiredness, iron deficiency, anxiety.’
One in three people are initially misdiagnosed, with early warning signs such as breathlessness, palpitations and dizziness, being mistaken for asthma or anxiety.
Maddy Orford was just 17 years old when, last August, she died of heart failure due to a condition called cardiomyopathy, which makes the heart less able to pump blood around the body
Barbara said: ‘We did not think it was anything more serious. Now I am working with the charity Cardiomyopathy UK to try and make people more aware of the symptoms, as early diagnosis is essential.’
Maddy, who passed away on August 7 last year, was visiting universities alongside her studies when she first started feeling peaky.
Speaking out about her daughter for the first time, Barbara said: ‘She was very keen on universities in Chester, Canterbury and Cumbria.
‘But day trips there to look at the campuses were hard because she kept getting really tired. She was exhausted – unusually so.’
Maddy (right) and her family – (from left) dad Philip, mum Barbara and sister Molly – did not know that her tiredness was a symptom of a life-threatening condition
Neither Barbara, nor her self-employed roofer husband, Philip, 63, or Maddy’s big sister, Molly, now 21, a retail supervisor, knew that she was displaying symptoms of cardiomyopathy.
The condition is regularly misdiagnosed as asthma or anxiety but – as in Maddy’s case –can be fatal.
Taking A-levels in psychology and sociology and a B-Tech in forensic sciences, Maddy struggled on, despite extreme tiredness, vomiting and severe migraines.
But things came to a head in September 2016.
She fainted while playing football for her beloved Pinchbrook United in Lincolnshire, resulting in a trip to the GP, who referred her to nearby Grantham and District Hospital.
Maddy (right) had been been to see her doctor but everybody thought her symptoms were ‘teenage tiredness, iron deficiency, anxiety,’ said mum Barbara (front right)
But, as her symptoms worsened her mother took her to casualty at Peterborough City Hospital where on November 21 it was revealed she had an enlarged heart.
Just a few weeks later she was diagnosed with cardiomyopathy.
‘We just don’t know how she got it,’ said Barbara. ‘It’s often genetic but wasn’t thought to be in her case.
‘However, tissue samples of her heart are currently with the coroner, so this is being investigated now.
‘The condition can develop from a virus, but we’ve thought back and don’t remember her having one.’
Following admittance to Peterborough City Hospital and, after being moved from casualty to a cardiac ward, Maddy was given more scans.
‘ECG scans showed she had a dilated heart valve,’ Barbara added. ‘She had fluid around her lungs and abdomen, so she was taken from casualty to the cardiac unit.
Maddy was a keen footballer and was playing for Pinchbrook United in Lincolnshire when she fainted and was taken to hospital, where bad news struck
‘It was incredibly frightening for her. She’d gone from being poorly at a football match, to going to a hospital full of much older people. But she was resolutely stoic.’
After a few weeks, Maddy was taken from Peterborough to the world-renowned Royal Papworth Hospital, in Cambridge.
There, the consultants started discussing transplants.
‘We were all shocked,’ said Barbara. ‘We didn’t know she was that sick.’
First, though, that December they fitted her with a cardiac resynchronisation therapy defibrillator (CRT-D) under general anaesthetic.
Maddy was studying for A-levels as well as a B-Tech in forensic sciences – she hoped to do a forensics degree at university
The palm-sized device was embedded into her heart with the aim of it regulating her heartbeat, when necessary.
It first kicked into action a month later back home, when Maddy was sleeping.
Doctors tried to perform two heart transplants on Maddy but neither was successful
Her mother was by her side, when she was woken by her daughter tossing and turning – clearly ill.
‘Her heart was beating at 235 beats per minute,’ Barbara explained.
‘The average adult heartbeat ranges from 60-100 beats per minute but, thankfully, the CRT-D worked.’
Then, at the end of May 2017, when Maddy suffered suspected food poisoning, her condition deteriorated, and she was admitted to Peterborough City Hospital.
‘On May 31, just two days later, she was transferred to Papworth,’ her mother continued. ‘And on June 7, she was officially put on the heart transplant waiting list.
‘Over the next few weeks, we had four false alarms when, sadly, the hearts weren’t viable.’
Disaster struck on June 25 when, at 1pm, Maddy had a cardiac arrest, which Barbara said left her ‘catastrophically poorly.’
‘Maddy had CPR and emergency surgery to be attached to an ECMO – a heart-lung bypass machine,’ she explained.
With sister Molly (left) and mum Barbara, who said Maddy ‘fought so hard to live’
‘She was put in a medical coma and her chest left open. She was also put on a super-urgent list for a heart.’
The family received the news they had been waiting for on June 28, when a viable heart was found.
WHAT IS CARDIOMYOPATHY?
Cardiomyopathy is a disease of the heart muscle that affects its size, shape and structure.
The condition is usually inherited.
The three main types of cardiomyopathy are:
- Hypertrophic – heart wall is thickened
- Dilated – heart muscle becomes stretched and thin
- Arrhythmogenic right ventricular – heart muscle cells cannot be kept together
All of these types of cardiomyopathy affect the heart’s ability to pump blood around the body efficiently.
They can also impact the way electrical signals make the organ beat.
There is no cure, however, in most cases people’s quality or length of life is unaffected.
Therapies may include medication, treatment to normalise heart rhythm, pacemakers and, in rare cases, heart surgery or transplants.
Source: British Heart Foundation
Taken down to surgery shortly before midnight, initially things seemed to be going well for Maddy.
‘But, as the medics walked back into theatre, after telling us this at 4am, she started to struggle,’ said Barbara.
‘The right side of the heart had enlarged, putting strain on her left side.
‘Maddy was put back on the ECMO, her chest was left open and she was put on kidney dialysis and given a nasal feeding tube and a blood cleaning machine.’
Sadly, on July 2, Maddy’s new heart stopped beating, which also affected her kidneys, spleen and small intestine.
She had her chest drained because of fluid build-up, and her sedation was lightened.
‘She was able to communicate with nods and blinks,’ said Barbara, who is still in touch with some of Maddy’s medical team who she said, ‘gave such brilliant care’.
‘She desperately wanted to get better. She was a fighter and would give us the thumbs up.’
Maddy’s admirable perseverance led to her being put being on the super-urgent list for a second time, on July 18, with the second transplant taking place on July 25.
Heartbreakingly, it failed again.
‘At 5am she was taken back into theatre, because of bleeding, and put back on the ECMO,’ Barbara recalled. ‘She was kept in a medically-induced coma.
‘On August 1 at 3am, her heart stopped beating and she went into cardiac arrest.’
Maddy’s mum Barbara Spiller is now working with the charity Cardiomyopathy UK and encouraging more people to sign up as blood and organ donors
After she had spent a few days in an induced coma on August 7, her family were told she was not accepting the heart and it would be ‘unsafe and unfair’ to put her back on life-support for what would have been the sixth time.
‘She passed away at 1.40pm,’ Barbara said. ‘It was heart-breaking. She fought so hard to live.’
Afterwards, hundreds of people attended her funeral at Bourne Abbey Church.
And now Barbara is working with the charity, making it her mission to teach people about cardiomyopathy. ‘Maddy had symptoms, we just didn’t realise,’ she said.
Hundreds of people attended Maddy’s funeral at Bourne Abbey Church after she died on 7 August 2017
‘But – like with many illnesses – early diagnosis is crucial. I also want to encourage people to sign up to the NHS Organ and Blood Donation Registers.’
‘Although Maddy’s organs sadly failed, it is so important that people donate organs. It is the gift of life.
‘It’s the same with blood donation. Maddy received more than 100 donations of blood and platelets. It kept her going. It’s so important. It’s the gift that gives hope.’
Joel Rose, chief executive at Cardiomyopathy UK said: ‘We don’t believe that generic cardiac screening can prevent cardiomyopathy.’
‘Instead, we need to continue to work harder to educate clinicians and the general public about the importance of identifying people who are at risk.
‘They should be screened appropriately and offered targeted genetic testing which we feel is a more effective use of NHS resources than an untargeted cardiovascular screening programme for all young people.
‘There is real shortage of organ donors in the UK, with only 1 in 3 people on the donor register.
‘Right now, there are around 250 people waiting for a new heart and most of these people will have cardiomyopathy.’
Call Cardiomyopathy UK’s helpline on 0800 018 1024 or visit www.cardiomyopathy.org.
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