A rare disease diagnosis and a new baby

At 40 weeks pregnant, Lisa Godden was told that her baby bump was significantly smaller than it should be. Nobody imagined that this could be due to a rare and potentially life-threatening heart condition called peripartum cardiomyopathy (PPCM). Lisa shares her story below to raise awareness on Rare Disease Day.

“I‘d gone for a routine check, but the midwife said my measurements weren’t right and requested an emergency scan. The next day I had an ultrasound scan, which showed that there was no amniotic fluid around my little girl,” explains Lisa. “I was sent straight to triage where I was induced there and then, but I ended up needing an emergency C-section. My blood pressure was high, but the doctors put it down to stress.”

After three days, Lisa felt well and was thrilled to go home with her new baby. While her blood pressure was still high, the doctors said it was probably due to low iron levels. “After a few days at home, I kept getting breathless and felt like I was having a panic attack. In the early hours, I remember lying down and I couldn’t breathe. It felt like I was drowning, I was clammy and my chest hurt.”

She got an ambulance to the hospital, where tests using various medical technologies were done. “My blood pressure was high and I was struggling to breathe even with the oxygen I was given in the ambulance,” Lisa remembers. The first test was a computed tomography (CT) scan, a high-resolution computerised x-ray of her heart that indicated Lisa was in heart failure.

“I was so scared, especially as it was 2022 and Covid restrictions were still in place, so I was there all by myself. I then had an echocardiogram, which showed that my heart was only pumping at 10 to 20%,” she comments. One of the doctors recognised that Lisa had PPCM and with the support of the scans and other medical technologies like blood tests, they were able to diagnose her condition.

PPCM is a rare disease of the heart muscle that only presents itself during the last few weeks of pregnancy or the months following birth. “It causes the heart to weaken so that it does not pump normally, causing an otherwise healthy young woman to experience symptoms of heart failure for the first time,” explains midwife Rebecca Jarman, who runs an online PPCM support group through the charity Cardiomyopathy UK.¹

“It is associated with significant trauma, both physical and psychological, at a key life moment when becoming a parent. However, the good news is that with the right care and treatment, around 70% of women make a full recovery,” she adds, noting that early diagnosis is critical.

Once Lisa had a firm diagnosis, she was put on medication and went home six days later. Within two weeks, another echocardiogram showed that her heart function had improved significantly, and a magnetic resonance imaging (MRI) scan the following month showed that there was no further heart damage.

“I’ll be on the medicines for the rest of my life and at first I was very anxious, but Cardiomyopathy UK and Rebecca’s online support group have helped me massively with my mental health,” says Lisa. “These days, I try not to worry about it.”