A COUPLE who were over the moon to get pregnant naturally having almost started IVF had their worlds shattered at a 20-week scan.
Alejandra Garcia and Daniel Butler were shocked to be told that there was something wrong with their baby’s heart, having thought heart conditions only happened in the elderly.
Alejandra and Daniel ButlerSupplied
SuppliedAlba had heart surgery at birth[/caption]
Their little girl, Alba, would be rushed into surgery at birth, having her heart operated on at just one hour old.
The family, from Blackpool, are sharing their story ahead of World Heart Day, and are supporting The British Heart Foundation’s September campaign, Spotlight, which raises awareness of hidden heart condition.
Alejandra said: “It had been a struggle to conceive a baby, we were due to start IVF and then I fell pregnant naturally with Alba which was just amazing.
“My pregnancy was going really well until the 20-week scan and the sonographer said she couldn’t see the heart.
“She went to get another colleague and the vibe in the room completely shifted, like we had walked from a room of colour into one that was grey.”
Despite how early the pregnancy was, Alejandra and Daniel, a carpenter, were told their baby had transposition of the great arteries (TGA).
Essentially, their baby’s heart was ‘plumbed backwards’, which is dangerous because it can prevent proper oxygenated blood flow.
Alejandra said: “I was just crying and not taking in what was being said.
“I just remember them saying the condition was fixable but that she would need an operation.
“I just couldn’t believe it – I thought it was only older people who had heart conditions and I felt so stupid.”
Congenital heart disease – which covers birth defects of the heart – is one of the most common types of birth defect, affecting almost one in 100 babies born in the UK.
Three surgeries as a newborn
“At our 36-week scan we were told that Alba would need surgery as soon as she was born,” Alejandra said.
“Because of this, we were advised to have a caesarean section and then Alba would need to go to hospital by ambulance immediately.
“I was also told I wouldn’t be able to go with her and most scarily of all, that there was a chance Alba might not make it.”
TGA is when the two main blood vessels leaving the heart are swapped over.
These are the pulmonary artery, which takes blood to the lungs to pick up oxygen, and the aorta, which takes blood from the heart to the body. They connect to different parts of the heart.
But switched over, the system is unable to function properly and the result is that the body is not served by properly oxygenated blood.
This can lead to death or heart failure.
Each day in the UK, around 13 babies in the UK are diagnosed with congenital heart disease
Chloe MacArthur
Alba was born and rushed to have surgery at just one hour old.
However, this surgery was a placeholder to keep Alba alive until her open-heart surgery at eight days old.
This second surgery took a gruelling nine-and-a-half hours in which her arteries were switched so that the heart could pump blood correctly.
Unfortunately, Alba had a lot of complications including fluid around her lungs which meant she couldn’t breathe. It meant she needed further surgery.
Alejandra, who works in marketing, said: “We essentially lived in hospital for five and a half months whilst Alba was being treated.
“Even though the staff were so lovely, it was incredibly difficult for us.
“Alba had tubes draining her lungs for ten weeks and her movement was really limited which made us worried about how it might affect her further down the line.
“However, slowly but surely Alba started to hit all of her milestones – talking by 12 months and walking at 14 months.”
Incredible, brave Alba is now six years old and she loves dancing, reading, writing and is full of life.
She is still under the care of the hospital who did her surgeries as a newborn.
And she will need more surgery over the next couple of years, because she has developed pulmonary valve stenosis, which is a narrowing of the pulmonary artery.
But the family are optimistic and enjoying life as a healthy family of five.
Alejandra said: “[Alba] knows her heart is different from other children’s and tells everyone that she has a ‘special heart’.
“She enjoys her big, impressive scar that runs down her chest. Although she can’t do contact sport, she still does P.E. but she gets breathless easily.
“We’re so grateful for the treatment she received, and we know that without modern science and the BHF’s lifesaving research, our Alba would not be here.
“Twenty years ago, Alba’s condition was treated with a different procedure that wasn’t as effective.
“The surgery has come such a long way thanks to life-saving research like the BHF’s.”
Before the BHF existed, the majority of babies diagnosed with a severe heart defect in the UK did not survive to their first birthday.
Today, thanks to research, more than eight out of ten survive to adulthood.
Chloe MacArthur, senior cardiac nurse at the BHF said it’s “wonderful to hear how Alba has overcome adversity”.
She added: “Each day in the UK, around 13 babies in the UK are diagnosed with congenital heart disease.
“The BHF’s research has helped families avoid heartbreak by developing better diagnoses, treatment and aftercare for poorly babies like Alba.
“That’s why this September we’re putting a spotlight on these conditions to raise their profile and fund ground-breaking research that could save and improve lives for generations to come.”
Visit spotlighton.bhf.org.uk to get involved by supporting the charity: Stories, stuff, time, or money – whatever you can give.
SuppliedAlejandra and Daniel when Alba was in hospital[/caption]
SuppliedAlba had three operations as a newborn. Pictured is the scar on her chest[/caption]
SuppliedAlba is now six years old and full of life[/caption]