We speak to Lancaster mum who has rare disease which means pregnancy could kill her

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A mum-of-two from Lancaster has a rare disease which means pregnancy could kill her - and has been warned she may die if she has a third baby.

Rebecca Smith, 35, suffers from peripartum cardiomyopathy - a rare disease which affects the function of the heart, in the last trimester before giving birth or shortly afterwards.

This was missed by medical professionals during her first pregnancy, and only caught after she'd given birth to her eldest son, Nathan, on April 21, 2007.

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Despite being told to "prepare for the worst", Rebecca made a full recovery - but the disease returned during her second pregnancy, in 2024.

Rebecca Smith with her eldest son Nathan in 2007. Picture from SWNS.Rebecca Smith with her eldest son Nathan in 2007. Picture from SWNS.
Rebecca Smith with her eldest son Nathan in 2007. Picture from SWNS.

After giving birth to her second child, Rowan, on November 27, she was prescribed nine different medications, including beta blockers, she'll need to take for the rest of her life.

Rebecca, a clinical support worker, from Lancaster, said: "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.

"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."

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Rebecca Smith with her eldest son Nathan in 2008. Picture from SWNS.Rebecca Smith with her eldest son Nathan in 2008. Picture from SWNS.
Rebecca Smith with her eldest son Nathan in 2008. Picture from SWNS.

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 on April 21, 2007, at the Hull Royal Infirmary, weighing 7lbs 4oz.

But Rebecca was immediately rushed to intensive care, after she started struggling to breathe.

Rebecca Smith with son Rowan. Picture from SWNS.Rebecca Smith with son Rowan. Picture from SWNS.
Rebecca Smith with son Rowan. Picture from SWNS.

"I was still a child myself," she said.

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"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 Smith with son Rowan. Picture from SWNS.Rebecca Smith with son Rowan. Picture from SWNS.
Rebecca Smith with son Rowan. Picture from SWNS.

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

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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 clot, the size of a "pigeon egg" 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."

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The new mum - who says she wasn't able to see her baby for the first eight months - was diagnosed with peripartum cardiomyopathy.

Rebecca Smith with son Rowan.Rebecca Smith with son Rowan.
Rebecca Smith with son Rowan.

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

Within one year, Rebecca's heart function returned to normal - but she was told, for 17 years, not to have another baby.

"I just thought 'my heart's fine now,' so I got pregnant again in 2024," she said.

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"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.

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Her second baby, Rowan, was born at Manchester St. Mary's Hospital at 12.41pm, on November 27, 2024 - 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."

Rebecca's experience has enabled her to run workshops at Manchester St. Mary's for junior doctors - educating them on the hidden symptoms of peripartum cardiomyopathy.

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