Mum warned she could die from rare disease if she gets pregnant again

A mum-of-two has a rare disease which means she’s at risk of heart failure if she has a third baby.

Rebecca Smith, 35, has peripartum cardiomyopathy, which affects the heart in the last trimester of pregnancy or shortly after giving birth.

This was missed by doctors when she was pregnant with her first son, Nathan, who she gave birth to in 2007, as doctors told her she had anxiety.

She made a full recovery after the illness was discovered, despite doctors warning she should ‘prepare for the worst’.

However the disease returned during her second pregnancy last year, and after giving birth to her second child, Rowan, on November 27, she was prescribed nine different medications she’ll need to take for the rest of her life.

Now Rebecca, a clinical support worker from Lancaster, is warning pregnant women of the importance of catching this disease early.

She said: ‘There’s such little knowledge of this disease – I was even told I had anxiety, the first time around.

‘But I wasn’t anxious, I was dying.

‘It’s crucial for pregnant women to catch this early – I’ll have to be on my treatment regime for the rest of my life.’

During her first pregnancy, Rebecca was presenting classic symptoms of heart failure – like swollen feet, constant tiredness and shortness of breath.

But these were missed due to their similarities to pregnancy symptoms.

Nathan, now 17 was born at the Hull Royal Infirmary weighing 7lbs 4oz – but Rebecca was immediately rushed to intensive care, after she started struggling to breathe.

‘I was still a child myself,’ she said.

‘My mum rushed in as they brought me through to ICU – I was hooked up to all these machines.

‘No one knew what was wrong with me, I had this fast heartbeat and pneumonia in my lungs.

‘After a week in intensive care, I was sent back to the ward – and three months later, diagnosed with anxiety and sent home with diazepam.’

Rebecca’s symptoms persisted after she returned home – which ended with her collapsing during her first walk with Nathan, two weeks later.

Her legs had turned purple, and Rebecca was rushed to A&E after calling an ambulance.

A scan showed she had two clots in her lungs and one on her heart – which was at risk of travelling to her brain.

Rebecca said: ‘They said to me: “This clot is going to go to your brain, prepare for the worst.”

‘Basically, I was told I was going to have a massive stroke – unless I started taking warfarin for the rest of my life.

‘But, by some miracle, the clot turned to gristle on its own – without medication.’

Rebecca – who says she wasn’t able to see her baby for the first eight months – was diagnosed with peripartum cardiomyopathy.

She managed to avoid having a heart transplant, due to medication like beta blockers increasing her function.

Within a year, Rebecca’s heart function returned to normal – but she was told not to have another baby.

‘I just thought “my heart’s fine now” so I got pregnant again in 2024,’ she said.

‘My pregnancy was absolutely fine, I even continued working all the way through.

‘But at 32 weeks, I had a scan and they told me my heart function had dropped slightly.

‘It started dropping every two weeks, and I was re-prescribed beta blockers.’

At 36 weeks and two days, Rebecca was told her heart function was severely low, and was re-diagnosed with peripartum cardiomyopathy.

Her second baby, Rowan, was born at Manchester St. Mary’s Hospital, weighing 5lbs 12oz.

After Rowan’s birth, Rebecca began taking nine medications a day, and says she ‘started planning Christmas’ in case she died.

‘I’m on full treatment, and still here,’ she said.

‘I’m on medication for the rest of my life – and no more babies.’

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