Little Edith was born with a deadly heart condition.
Her only chance of survival is an extremely risky – and very long – operation.
Edith is one of the tiny patients featured in tonight’s BBC fly-on-the-wall BBC documentary, Hospital.
She was born with hyper plastic left heart syndrome, which means she has just half a heart.
Tiny Edith can’t get enough blood into her lungs – but that hasn’t stopped being one of the happiest babies currently being treated at Alder Hey Children’s Hospital in Liverpool.
Baby Edith was born with just half a heart
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Her mum said: "She just smiles at absolutely everyone."
Edith’s condition was diagnosed almost as soon as she was born and she has spent virtually all of her short life in Alder Hey.
But suddenly, her oxygen levels drop dramatically while she is on the ward and baby Edith has to be rushed to intensive care and placed on life support.
Her devastated parents are told her only chance is for surgery.
Dr Ramana Dhannapuneni lays out the very real risks to them.
The team at Alder Hey review Edith’s progress before her surgery with her parents
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He said: "There is a significant risk of it not working, of bleeding, brain injury, infection or death but we have to do this."
Edith is in surgery for an incredible 11 hours as her terrified parents struggle to control their emotions outside theatre.
Consultant cardiologist Gemma Penford is brought into the operation to create a stent to help Edith’s heart pump more blood into her lungs.
But there are complications.
While she is in recovery, Edith starts to bleed into her chest and needs several blood transfusions.
Dr Ramana Dhannapuneni spent 11 hours operating on tiny Edith
(Image: BBC/Label1/Ryan McNamara)
Nurses carefully monitor her conditions while her helpless parents desperately hope for the best and put their trust in her doctors and nurses.
After a month in intensive care the courageous little girl gives medics and her family an amazing sign that she is going to make a ‘miracle’ recovery.
While still hooked up to breathing support and not taking breaths on her own, Edith decides enough is enough.
She throws off her own oxygen mask and breathes on her own for the first time in seven weeks.
A delighted Dr Dhannapuneni says: "Some children tell themselves what they should do, they know their own minds.
All of the babies are critcally ill and need urgent surgery
"Edith has said ‘I don’t need your support, thank you very much’."
Her incredible determination not only reduces her proud mum and dad to tears – even the nurses can’t stop crying.
Edith’s dad only words are "absolutely amazing".
And her mum and dad are finally able cuddle her for the first time in seven weeks.
She was finally well enough to be transferred to a general ward.
The team of surgeons get to work
And her family were given the best news when their little girl was home time time for Christmas.
Little Aaima is another patient treated by the team at Alder Hey.
The five-year-old has a similar condition to baby Edith and has had several operations already in her short life.
Despite several delays due to a lack of beds, she’s finally wheeled into theatre.
There are some complications and a quarter of her blood is lost.
Brave Aaima was allowed to return home just 11 days after her dramatic surgery
But Aaima is a determined little girl and just a few weeks later is able to return home with her family.
Her father says: "The surgeons, doctors, NHS – the effort they all put in is just unbelieveable.
"They’ve saved my daughter’s life."
But not all the babies treated at Alder Hey are so lucky.
Baby Casey Jack was born with congenital heart disease.
Despite the best efforts of surgeons, nurses and all medical staff at the Liverpool Hospital, the little boy lost his fight for life on December 28 last year.
Tragically, not all the babies survive
There are just three specialist cardiac surgeons working at Alder Hey, which treats 250,000 children and young people from across the North West every year.
The struggle for beds is a daily one and many operations have to be cancelled and delayed while the team desperately try to juggle a lack of beds and staffing issues.
But for those working at Alder Hey, they wouldn’t change it for the world.
Dr Dhannapuneni admits his punishing and long hours mean he doesn’t spend much time with his family.
One of the reasons he has agreed to appear on the show is to explain to his daughters why he can’t spend time at home.
There are just three of the specialist surgeons treating all the tiny heart patients at Alder Hey
(Image: BBC/Label1/Ryan McNamara)
And on days where he is in surgery for a huge amount of time, such as Edith’s mammoth 11 hour operation, the only things he will eat are a bag of crisps and a cup of coffee.
He explained: "I do feel guilty because I can’t give pay so much attention to my wife and children.
"But if I had my life again, I would do exactly the same thing."
While plans are in place for two extra recovery beds to free up space in intensiev care, it is unclear when the funding will be available for them to become a reality.
Chief of congenital cardiac surgery at the hospital, Mr Rafael Guerrero, says: "It’s no longer a winter crisis, it’s an all year round crisis."
- Hospital is back on BBC2 next Thursday at 9pm.
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