Baby’s heart failure missed by docs

Daily Mirror

Laura Beadle, from Banbury, Oxfordshire, says her son Lucca might one day need a heart transplant because of the damage suffered during the first delicate weeks of life

A new mum has shared harrowing videos of her son struggling to breathe with the Daily Mirror to raise vital awareness of what heart failure in babies looks like.

Laura Beadle first thought her 12-day-old son was just fussing during feeds, but after seeing a GP ‘just in case’, learned her baby was suffering a dangerous heart obstruction.

Within hours, baby Lucca was diagnosed with coarctation of the aorta, which leaves the heart pumping ‘against a closed door’, and went floppy in his mum’s arms, turning blue. He needed emergency heart surgery to save his life.

Lucca, now six months old, has recovered well but remains in heart failure, and will one day need a transplant because of the damage to his heart in those first delicate weeks of life.

Mum Laura, Head of Care in a care home, said, ‘there had been a few minor heart issues spotted on my pregnancy scans but cardiologists reassured us it was nothing urgent, and something to keep an eye on as he grew up.


‘When he started fussing with feeds, I flagged it to the midwives coming to check up on us during lockdown in November, but since Lucca was gaining weight well, there wasn’t any concern.’

Every year, 1,000 babies leave UK hospitals with no-one knowing they have a serious heart condition, putting them in grave danger of going into heart failure. Sadly, some don't get the life-saving treatment they need in time, with congenital heart defects (CHD) accounting for up to 12 per cent of infant deaths.

It was only after Lucca’s emergency surgery that Laura, 27, and her husband James, 28, learnt the weight their baby had beengaining was not healthy, but in fact fluid retention because of heart failure.

‘Lucca was actually losing critical weight but looked chubby because of the water he was retaining,’ Laura explains. ‘It’s only now I look at the pictures of him hours before his surgery that I can see his face was puffy.’

Looking back, the new mum recognises the subtle symptoms of heart defects and the resulting heart failure were there with Lucca,but so subtle that they were easily missed. Symptoms can includefussing during eating, being unsettled, a loss of appetite, crying often, and cold hands and feet.

‘These are all things than can happen in normal babies too,’ first-time mum, Laura explains. ‘I had no idea he was so ill. It was incredibly lucky I took him to the GP when I did, as she referred us to the local paediatric team at Horton General Hospital in Oxfordshire and it was there that Lucca went floppy and struggled to breathe.’

Shallow, fast or strained breathing, where the baby’s chest sucks in with each breath are another vital clue for heart problems. 

Every year, one in every 125 babies is born in the UK with a serious heart defect – that’s one every two hours, or 6,000 babies a year

Lucca was rushed by ambulance to a specialist cardiac centre in Southampton General Hospital and underwent heart surgery after his lips turned blue. His heartrate had shot up to 220 beats a minute, and his oxygen levels plunged to 45 despite his laboured breathing, leaving Lucca in critical condition.

The newborn had suffered a coarctation of the aorta, where a small duct in the heart that usually closes after birth had formed extra tissue, causing a narrowing of Lucca’s aorta. It had left his heart working extra hard to pump blood around his body, leading to organ failure.

Laura and James rushed to be by their baby’s side from their home town of Banbury. When they arrived, they were met with a sight that will strike fear into the heart of any parent.

‘I will never forget it,’ Laura recalls. ‘Our baby was on this tiny hospital bed, hooked up to so many monitors. There were tubes going into his mouth and body, and I looked at him and thought: this isn’t my baby. This is the sort of thing that happens in films, not in real life.’ 

Lucca remained on life support in paediatric intensive care for three days. Later, he was slowly weaned off the sedation, which can be seen in another touching video mum Laura captured as her little boy came around.

She can be heard saying hello as Lucca opens his little eyes to his mum’s voice, and looks straight at her.

Laura adds, ‘I could see straight away that the puffiness in his face was going down. Since then, he has come on in leaps and bounds, and to look at him, you’d never know he’s in heart failure. But eventually, he will need medication to control it, and when that fails, a heart transplant.’

In the meantime, Laura feels blessed that her little boy has been such a fighter, and is working hard alongside James to raise awareness of congenital heart disease.

She says, ‘the main symptom I want other parents to know about is the swelling. Newborns usually experience a drop in weight before gaining again so you should always question rapid weight gain.’

Lucca gained 800g in his first week and was hard to wake. ‘It’s not the midwife’s fault that these symptoms of CHD weren’t red flags, but I think community nursing teams need more training. As Lucca was my first, I had nothing to compare his progress too so I simply didn’t know these things weren’t normal,’ Laura adds.

The Tiny Tickers charity has launched their Think HEART campaign, helping parents to recognise the key signs that their baby may have an undiagnosed heart defect. 

They’re also working to improve the early detection and care of babies with CHD by training the sonographers who carry out pregnancy scans to be better able to detect heart defects, placing potentially life-saving equipment in maternity units and spreading awareness of the signs and symptoms of CHD.

 

CHD FACTS:

• Around 3,000 babies with CHD under a year old have surgery each year.

• The early detection of CHD either during pregnancy or immediately after birth is crucial for giving these babies a better chance of survival.

• National prenatal detection rates of CHD (at pregnancy scans) are just over 50%.

 

ENDS

 

Punteha van Terheyden