We thought our baby had Covid - it turned out to be holes in her heart

The parents of a five-year-old girl born with holes in her heart have stressed the importance of prenatal diagnoses after multiple scans failed to pick up her condition.

Emily Bowen and Mathew Mariani felt their worries were "palmed off" but it turned out baby Esme had a serious heart defect that needed surgery.

The couple, from Hendy in Carmarthenshire, have since raised thousands of pounds for British Heart Foundation (BHF), which described Esme's procedure as "life-saving".

Hywel Dda and Swansea Bay health boards, which jointly oversaw her care, said they were sorry to hear about the family's experiences and would welcome discussing the concerns with them directly.

Emily, 33, said she and her partner Mathew, 38, noticed "a few signs" something was amiss during her pregnancy, including an ectopic heartbeat, but it was "palmed off" and "put down to external factors" like caffeine or stress.

Emily said she reduced both but had a gut instinct something more was wrong.

"I just had a funny feeling something wasn't right because when the pram arrived, I didn't want to take the tags off.

"I was like 'what if we need to take it back?' and everyone was like, 'you're 30 weeks, why are you being silly?'"

When Esme was born on New Years' Day 2021, one week before her due date, she seemed fine, her parents said.

As it was a Friday, they were kept in over the weekend so an electrocardiogram (ECG) could be done, and then discharged.

A few days later, her heart was scanned again and still no issues were raised.

As first-time parents, Emily and Mathew didn't know what to expect, or what was normal, but when - at a week old - Esme started being sick while feeding, Emily knew she had to get help.

"I was crying, I was in bits," she said. "But I got told 'you're hormonal, you're a new mother, everything's fine'."

The next day, "major red flags" began to emerge, including what Emily later learned was recessive breathing and a high heart rate.

After calling 111, they were referred to an out-of-hours clinic.

"I'm just grateful the doctor took action when he did because I think if we hadn't rang when we did or we hadn't been taken seriously, she might not have been here today."

Esme was admitted to the paediatric assessment unit, where staff believed she had an infection - most likely Covid or another respiratory condition.

"We got put on a Covid ward, into a high dependency unit... we thought she'd had Covid - we'd just come out of the second lockdown and it was bigger circles [of people meeting] at that point, so the chances of getting it were higher."

It was during this admission she had an echocardiogram for the first time and was diagnosed with Atrioventricular Septal Defect (AVSD) - a condition where there are large holes between the heart's chambers and only one shared valve, instead of two.

Emily said the family has never been told why the condition was not picked up during prenatal scans, adding they know of other families who knew their child had AVSD prior to giving birth.

"Nobody picked it up, I was having extra scans, extra checks," she said.

"We were flabbergasted really that we, both as healthy adults and relatively young parents, would have a poorly child."

She said they learned the condition was more common among children with Down’s syndrome but Esme did not have this.

As Covid restrictions were still in place, an already worrying time in their lives was worsened.

"It was one in, one out. They wouldn't let us on the ward together.

"I was staying in Cardiff with her, so Mathew had to come on his own to visit and I'd have to go somewhere else. Everything was shut, so... me and my mother would sit in the car while he spent time with her."

After Esme was discharged in February, the family was in and out of hospital regularly and a big focus was helping her gain enough weight to be able to have surgery.

"Because her heart was working so hard and was enlarged she couldn't hold down much," explained Emily, adding she had to be tube-fed high-calorie formula.

Once Esme reached her goal weight, her open-heart surgery - the only way to repair ASVD - was postponed four times before it finally took place in Bristol in July 2021.

"By the time we got there, I was just relieved that she was having it and that she was having that second chance at life," said Emily.

"I'm just grateful she made it and she's here and she's five."

But she added prenatal diagnoses "could have changed our story all together".

Esme is still technically classed as in heart failure and takes medication to manage her condition but is non-symptomatic and enjoys a normal childhood, Emily said.

The youngster will need further surgeries, as her parents have been told repairing her heart is like "stitching jelly" and there is more pressure on it than is typical.

But Emily explained it was a case of monitoring her health and progressing to the next procedure only when she needs it.

"She's the busiest five-year-old I've ever met, she doesn't stop," she said.

Swansea Bay University Health Board said it was "very sorry to hear of the family's concerns regarding Esme's care" and "would welcome the opportunity to discuss them with the family directly".

Sharon Daniel, Hywel Dda University Health Board's director of nursing, quality and patient experience, added she could not comment on individual cases but was "sorry to hear of any experience where a family feels our delivery of care fell short" and encouraged them to contact its patient services team.

"Our maternity and ultrasound services are delivered by appropriately trained professionals using nationally approved screening pathways and equipment standards," she said.

"We are committed to learning where improvements are needed."

Esme's family now celebrates her "heart anniversary" like a birthday and has raised about £18,000 for BHF, which funded research by Esme's surgeon.

Mathew has run the London marathon three times to raise funds and the couple has also raised the same amount again collectively for other charities.

"Mathew does the challenges and I class myself as campaign manager," joked Emily - although she is training to run Cardiff half marathon in October.

As well as money, their aim is to raise awareness and support other people in the "community nobody wants to be a part of", with social media connecting them with families across the UK and beyond.

The family is also part of BHF's Living Memory campaign, where 65 benches have been placed at locations across the UK to mark its 65th year - each one celebrating someone who is living with a heart or circulatory disease thanks to the charity's research.

Esme's bench is at Swansea Bay, where friends and family can visit it.

"It's a nice place to sit and reflect on what we've been through as a family," said Emily.

"We're just so proud of Esme and the legacy that she's got. I don't think she realises how special she is, but we'll never forget."