Mum from Loose near Maidstone explains baby was diagnosed with bronchiolitis but had rare heart condition known as ALCAPA

The mum of a baby who was misdiagnosed with a common chest infection has shared how her daughter needed major open-heart surgery aged just eight weeks old.

Suzan Girgin, from Loose near Maidstone, had what she thought was a perfectly happy and healthy baby called Leila on October 23, last year.

But on December 8 the seven-week-old was rushed to Pembury Hospital after suffering vomiting, changes to her breathing, a sweaty head, reduced appetite and episodes of severe distress.

The doctors diagnosed her with bronchiolitis, a common chest infection that affects babies and children under two, but they also detected a heart murmur. However, the family were told it was most likely virus-related and should resolve, so Leila was discharged.

Suzan, an advanced veterinary nurse, said: “With respiratory viruses and conditions, the clinical signs are very similar to those you have with cardiac disease.

“I wasn’t expecting anyone to identify ALCAPA [anomalous left coronary artery to the pulmonary artery] but I would expect them to recognise the signs of heart disease and in fact she was in heart failure at that time.”

In response, Maidstone and Tunbridge Wells NHS Trust said its priority is to provide “safe, high-quality and timely care” and treats patients based on the symptoms using a range of diagnostic tests and observations.

A week later on December 17, when her symptoms hadn’t improved, Leila was taken to Maidstone A&E. On that day a cardiologist from The Royal Brompton hospital was at the site and carried out a heart scan on the infant.

It was then the family’s world began to turn upside down, as they were told her heart was not working properly and needed to be transferred to The Royal Brompton in an ambulance with specialist equipment.

Not long after, Suzan and her partner Billy would learn their daughter had an extremely rare condition.

At only eight weeks old, little Leila was diagnosed with anomalous left coronary artery to the pulmonary artery (ALCAPA), a heart defect which means the left coronary artery, which carries blood to the heart muscle, begins from the pulmonary artery instead of the aorta.

The mum-of-one said: “Only approximately one in 300,000 babies are born with this condition but it was something she would have developed in the womb.

“So, her heart had been failing ever since her birth.”

When the family were finally given the diagnosis, both parents said they felt “numb”.

Suzan said: “You go through your pregnancy, and you get told when you have your baby that they are happy and healthy.

“Then obviously when we went to Pembury and had the diagnosis of bronchiolitis, to then be told that your baby actually has cardiac disease, was in heart failure, and needed emergency surgery because she was in a critical state – it’s quite hard to process.”

Because Leila’s heart was working so hard to compensate for only receiving half the amount of blood it needed, doctors found it was more than twice the normal size and was compressing her lung, causing it to collapse.

The 37-year-old said: “Had we left her and carried on with the diagnosis of bronchiolitis, she would have died at home within a couple of weeks, and we would have had no idea what had caused her death.”

The next day Leila was rushed in for immediate open-heart surgery, but a bleed during the operation meant it ended up taking nine hours instead of five.

“So you can imagine we were sitting in the family room, dreading everything and thinking the worst because you don’t get updated on what’s happening you’ve just got to wait.

“It’s the longest wait of your life when your baby’s having major open-heart surgery and you’re not really sure what’s happening.”

Due to the length of the surgery, Leila’s chest had to remain open and her parents were advised that if she was on the machine for more than three days, she had a high risk of a blood clot travelling to her brain which would cause her to suffer a stroke.

But after 60 terrifying hours with Leila hooked up to a machine for life-threatening heart and lung conditions, her heart was strong enough without the equipment.

Suzan has described the recovery as “tortuous” with many ups and downs, including when her daughter’s lung collapsed when an attempt was made to take her off tubed ventilation.

But thankfully, after 10 weeks at Royal Brompton, Leila was able to come home on February 23.

Although there is a chance she might need another surgery, the family are hopeful that her heart will continue to heal as she grows.

Now Suzan and Billy are sharing their story to raise awareness for the clinical signs of cardiac disease.

The parents believe Leila’s misdiagnosis of bronchiolitis delayed her from getting the early intervention she needed and if she hadn’t trusted her mother’s gut in thinking something else was wrong, Leila would not be alive right now.

She said: “Just listen to your gut. It’s better to go and be wrong about something and have it investigated than to not stand up for yourself and your baby.”

Thanking the Royal Brompton and the paediatric consultant at Maidstone hospital, she said: “They saved our Leila’s life, thanks to them we get to watch her grow and see her beautiful smile every day.”

She added: “Sadly, other parents in our situation have not been so lucky and this could all be prevented if babies hearts were checked more thoroughly.

“Leila fought the whole way through, she’s such a tough little thing. She faced death and came back from it.”

Suzan and Billy have since complained to Pembury Hospital about their experience and are awaiting the outcome of Maidstone and Tunbridge Wells NHS Trust’s findings into their investigation.

The parents want to thank The Brompton Fountain, the in-house charity at The Royal Brompton, as their assistance allowed them to stay in hospital the whole time Leila was there.

Suzan directs readers to The Baby Ronnie Foundation, which raises awareness for cardiac disease. The non-profit organisation sends bears to babies in hospital.

For parents facing similar circumstances, Tiny Tickers is a charity offers a range of advice and information for parents with babies and children with cardiac disease.

A spokesperson for Maidstone and Tunbridge Wells NHS Trust said: “Our priority is to provide safe, high-quality, and timely care, treating patients based on the symptoms using a comprehensive range of diagnostic tests and observations.

“For rare or complex conditions, additional hospital visits for further testing may be needed, and we may refer patients to specialist hospitals where appropriate.

“We have thoroughly reviewed this patient’s care and would like to apologise to the family for the delay in responding to them.”