A couple have told of their shock after their newborn was diagnosed with a hole in his heart when he was taken to A&E with a suspected cold sore.
Bertie Rees-Bryan, from Gloucester, was a healthy baby until his ordeal.
In February, at just six days old, his worried parents rushed him to the ER after noticing a blister on his lip.
However, upon examining him, doctors discovered that he had a heart murmur.
Tests later confirmed that he had a hole in his heart, medically known as a ventricular septal defect (VSD).
Bertie Rees-Bryan (pictured), from Gloucester, was an otherwise healthy baby – until his ordeal. In February, at just six days old, his worried parents rushed him to the ER after noticing a blister on his lip.
However, upon examining him, doctors discovered that he had a heart murmur. Tests later confirmed that he had a “hole in his heart,” known medically as a ventricular septal defect (VSD). Her parents, Gabrielle Bryan and Tyler Rees (pictured), are now urging parents not to ignore any worrying symptoms.
VSD occurs when there is a hole in the wall between the two lower chambers of the heart: the ventricles. This causes blood to leak between the two sides of the heart, which are supposed to be separated into oxygenated blood and deoxygenated blood.
Her parents, Gabrielle Bryan and Tyler Rees, are now urging parents not to ignore any worrying symptoms.
Mrs Bryan, an army sergeant, said: “We thought it might have been a cold sore, which can be quite dangerous for young babies.”
“It was then that doctors detected a heart murmur and the next day he was seen by a pediatric cardiologist, who diagnosed him with a large VSD.
‘At the time, we didn’t know much about heart disease and thought the worst.
“I thought I was going to lose my baby at that moment.”
VSD occurs when there is a hole in the wall between the two lower chambers of the heart: the ventricles.
This causes blood to leak between the two sides of the heart, which are supposed to be separated into oxygenated blood and deoxygenated blood.
It is the most common heart condition that babies are born with. Affecting around one in 500, according to the NHS.
In many cases, the small holes eventually heal without intervention and, if they do not cause any symptoms or stretch the heart, they will not require treatment.
However, if the hole is large, the amount of blood leaking between the chambers can permanently damage the heart and lungs and increase the risk of infections.
For this reason, surgery is required to close the hole.
Following Bertie’s diagnosis, the couple sought help from Heart Heroes, a charity that supports children diagnosed with heart conditions.
Mrs Bryan said: “I had seen a poster on the hospital wall about Heart Heroes and we went along when Bertie was about three weeks old.
‘I went to that group and met other parents and met children who had been through everything and worse too.
‘We could see how they were thriving and also got advice from the other parents.
‘When we first found out, we felt very alone. I didn’t know anything about heart disease and I really thought we were going to lose him.
‘Receiving that support keeps us going. I also want to help other people who will be in my situation in the future.’
The couple have now called for additional testing for heart disease during pregnancy and have begun fundraising for Heart Heroes through challenges including a burpee competition and a half marathon, raising more than £3,000 to date.
Mrs Bryan added: “My mate plays for Smiths Rugby in Cheltenham and we wanted to run the half marathon so we asked everyone in the team if they wanted to raise money for Heart Heroes and now basically the whole team are running the half marathon.” . On September 1.
“The rugby club also organized a fundraising day for the Combined Cup, which also raised £1,000.”
Congenital heart disease may initially be suspected during pregnancy by routine ultrasound of the baby in utero.
Following Bertie’s diagnosis, the couple sought help from Heart Heroes, a charity that supports children diagnosed with heart conditions.
But only after a specialized ultrasound, medically known as fetal echocardiography, can an exact diagnosis be confirmed.
This may also be done if there is a family history of congenital heart disease or when there is an increased risk.
However, it is not always possible to detect heart defects (particularly mild ones) using fetal echocardiography, says the NHS.
She said: ‘I think heart disease should be mentioned more during pregnancy.
“Often these heart conditions can be contracted while in the womb, but we didn’t find out until he was six days old.
‘There are calls for scans to be carried out across the country, because at the moment they are not being done, and that is how things are overlooked.
The couple have now called for additional testing for heart disease during pregnancy and have begun fundraising for Heart Heroes through challenges including a burpee competition and a half marathon, raising more than £3,000 to date.
Mrs Bryan said: “I think heart disease should be mentioned more during pregnancy. “Often these heart conditions can be caught while in the womb but we didn’t find out until she was six days old. ‘There are requests for scans to be carried out throughout the country, because right now they are not done, and that is how things are overlooked’
‘I want to be there to provide support like people have supported me. This money will help Heart Heroes continue to support people.’
Heart Heroes founder Kelly Cornish said: ‘Heart Heroes was founded in 2018 and has been dedicated to supporting children with lifelong heart conditions and their families, like Bertie’s.
‘We are delighted to see Amy and Rachel take on their incredible challenge for our charity.
“It is heartwarming to witness families like Bertie’s surrounded by the love and support of our community, friends and family.”