A new mum has told of the harrowing moment her newborn son went floppy and turned blue in her arms after she thought he was just being fussy during feeds.
Laura Beadle felt something wasn’t right so took her 12-day-old son Lucca to a GP “just in case” – a decision that revealed a dangerous heart obstruction and saved his life.
Within hours, Lucca went floppy in his mum’s arms and turned blue as he suffered a coarctation of the aorta, which leaves the heart pumping “against a closed door”. He needed emergency heart surgery to save his life.
Lucca, now six months old, has recovered well but remains in heart failure, and might one day need a transplant because of the damage to his heart in those first delicate weeks of life.
His mum has shared harrowing videos of Lucca, at three months, struggling to breathe to raise vital awareness of what heart failure in babies looks like.
Laura, head of care at 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, the Tiny Tickers charity says.
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 been gaining was not healthy, but in fact fluid retention because of heart failure.
Laura, from Banbury, Oxfordshire, said: “Lucca was actually losing critical weight but looked chubby because of the water he was retaining.
“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 include fussing during eating, being unsettled, a loss of appetite, crying often, and cold hands and feet.
Laura said: “These are all things than can happen in normal babies too.
“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.
Lucca was rushed by ambulance to a specialist cardiac centre in Southampton General Hospital and underwent heart surgery after his lips turned blue.
His heart rate had shot up to 220 beats a minute, and his oxygen levels plunged to 45 despite his laboured breathing, leaving him in a 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. When they arrived, they were met with a sight that will strike fear into the heart of any parent.
Laura said: “I will never forget it. 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 said: “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.”
He will need medication to control it and he might need a heart transplant in the future, she added.
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 said: “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 (1.7lbs) in his first week and was hard to wake.
Laura said: “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.”
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.