I waited 17 years to have a second baby because doctors warned me I could die from a rare disease.

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

Rebecca Smith, 35, from Lancaster, Lancashire, suffers from peripartum cardiomyopathy, a rare condition that affects heart function in the third trimester.

Medical professionals missed the rare heart condition during her first pregnancy and only detected it after she gave birth to her eldest son, Nathan, who is now 17.

“It’s critical that pregnant women catch this early,” Rebecca said. ‘I will have to follow my treatment regimen for the rest of my life.

‘There is very little knowledge about this disease; I was even told I had anxiety the first time. But I wasn’t anxious, I was dying.’

At the time, Rebecca, a clinical support worker, was suffering from swollen feet, fatigue and shortness of breath – all symptoms of both heart failure and pregnancy.

Nathan was born on April 21, 2007 at Hull Royal Infirmary and weighed 7lb 4oz, but Rebecca was immediately moved to intensive care after she started having difficulty breathing.

Recalling the traumatic birth story, Rebecca said: “I was still a little girl.

‘My mother ran in when they took me to the ICU; I was connected to all these machines. Nobody knew what was happening to me, I had a racing heart and pneumonia in my lungs.

“After a week in intensive care I was sent back to the ward and three months later I was diagnosed with anxiety and sent home on diazepam.”

But Rebecca’s symptoms persisted after returning home, ending 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 he had two clots in his lungs and a clot the size of a “pigeon egg” in his heart, which was at risk of traveling to the brain.

‘They told me: ‘This clot is going to go to your brain, prepare for the worst.’

‘They basically told me 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 into cartilage on its own, without medication.”

The new mother, who says she was unable to see her baby for the first eight months of his life, was eventually diagnosed with peripartum cardiomyopathy.

He managed to avoid a heart transplant because medications such as beta blockers increased its function.

Within a year, Rebecca’s heart function returned to normal, but doctors urged her not to have another baby for 17 years.

In 2024, Rebecca became convinced that her heart was ‘fine’ and decided to get pregnant again.

“My pregnancy was absolutely fine, I even continued working throughout the entire process,” she said.

But the disease returned during the third trimester.

“At 32 weeks, I had a scan and was told my heart function had decreased slightly,” Rebecca explained.

“It started going down every two weeks and I was put back on beta blockers.”

At 36 weeks and two days, Rebecca was told her heart function was very low and she was again diagnosed with peripartum cardiomyopathy.

Their second child, Rowan, was born at St. Mary’s Hospital in Manchester at 12:41 pm on November 27, 2024, weighing 5 pounds 12 ounces.

After Rowan’s birth, Rebecca began taking nine medications a day and said she “started planning for Christmas” with her family in case she died.

“I’m in full treatment and I’m still here,” he said. “I’ll be on medication for the rest of my life and I won’t have any more babies.”

Using her experience with peripartum cardiomyopathy, Rebecca now runs workshops at Manchester St Mary’s for young doctors, educating them about the hidden symptoms of this rare heart condition.