When Astrid Tordoff was born on June 16, she “seemed absolutely, perfectly fine for the first 16-17 hours of her life”, said mum Amelia.
Amelia and her husband, Charles, were excited to take their little girl home to Sheffield, where their two daughters were waiting to meet their sister.
But routine checks before discharge took longer than expected, when a midwife noticed something was unusual.
According to Yorkshire Live, it was discovered that Astrid had a heart murmur, which can cause symptoms of a grey-ish skin colour, difficulty breathing and a weak pulse.
A heart murmur is quite common in newborn babies. But Amelia said she could tell from the facial expressions of medics that it was “significant”.
She said: “I’d gone from being in a state of pure joy to thinking, ‘what on earth is going on?’.
“I was trying to stay calm because I still thought she’d be alright – but it did feel like I was having some sort of weird out of body experience.”
Later that day, Astrid was taken to the specialist heart unit at Leeds Children’s Hospital, where it was confirmed she had a form of congenital heart disease.
Known as hypoplastic left heart syndrome, the birth defect meant she had only half a heart.
In this condition, the left side of the heart is critically underdeveloped, which means blood can’t effectively flow around the body.
Surgery is the only option, and without it, hypoplastic left heart syndrome is deadly, usually within the first few days or weeks of life, according to the Mayo Clinic.
Impossible decision
The family were faced with an impossible decision – to give Astrid major surgery, or opt for what’s known as comfort care.
“If we thought it was going to fix her, we’d have opted for the surgery without question,” said Amelia.
“She probably had a 50/50 chance of surviving it and if she did, there would be more surgery to come.
“But it didn’t seem like putting her through it would buy her any quality of life.
“It was just a horrific choice to make, and I’ll always question whether we did the right thing.
“But I think deep down I know we did.”
You are quite literally going through hell, the worst thing that anyone can experience
Amelia
The family thought they wouldn’t have more than two or three days with Astrid.
They were offered the homely surroundings of Bluebell Wood Children’s Hospice in Sheffield, where the family made “beautiful memories”.
Amelia said: “This may sound strange as Astrid is very much a part of our family, but we needed our home to remain a safe space for our other two girls.
“It sounds like a funny thing to say but Bluebell Wood will always be Astrid’s home.
“You are quite literally going through hell, the worst thing that anyone can experience, and yet you’re so comfortable and so well looked after.”
Astrid continued to defy the odds and lived for more than two weeks after her diagnosis, during which time she was surrounded by family.
The baby girl sadly died in the arms of her loving parents in the early hours of July 3.
What is hypoplastic left heart syndrome?
HLHS is a complex, critically serious condition in which the left side of the heart fails to develop properly in the womb.
As a result, there’s hardly any oxygen-rich blood circulating around the body. Nobody knows the cause.
The baby can survive the birth and even look well to begin with, because newborns have a channel called the ductus arteriosus that connects both sides of the heart. But the ductus soon closes, and the situation becomes life-threatening.
Treatment is complicated and requires a series of ops. For most babies with HLHS, the preferred option nowadays is the Norwood procedure, a delicate open-heart operation.
There’s also a hybrid procedure which involves surgery and catheter treatment.
With such a severe form of heart disease, not all babies survive to adulthood, but many now do.
Amelia said: “We doubted everything. How could she possibly have half a heart when she was living for days and days?”
“We were always very honest with them [their other children], but I hope we protected them from the worst horror of it all.”
The family is now fundraising for Bluebell Wood Children’s Hospice in Astrid’s memory.
Amelia said: “Without Bluebell Wood it would have been so different.
“We wouldn’t have had that support and we wouldn’t have been able to make all those positive memories – not just for us but for the girls and our families too.”
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