BRAVE Evie Green, 4, has been in hospital for over a year – and she has just one wish.
The “sassy” little tot first went into hospital in February 2023, in need of a heart transplant.
She is being kept alive by a machine after being diagnosed with dilated cardiomyopathy – a condition where the heart walls become too weak to pump blood – when she was four months old.
The four-year-old has now spent a quarter of her life so far in hospital, her mum Chloe told Sun Health.
Evie seemed to be doing well on medication but doctors began to spot warning signs of heart failure in the lead-up to February last year.
She deteriorated really quickly over the space of about two days.
“Suddenly she was really lethargic, tired, sleeping all day,” Chloe said, recalling how her daughter was just not like herself.
Evie will often “power through and play” despite not feeling very well, so the mum knew things were serious.
She’s stable at the moment attached to a Berlin Heart, a machine that’s used to support children with severe heart failure.
But the machine comes with risk of stroke and infection.
The little tot has already suffered multiple infections and battled deadly sepsis in September 2023.
“That was a really bad patch for us,” mum Chloe said.
She’s also had a stent done to keep her heart functioning.
“Between April and September last year it was a really tough journey,” Chloe told Sun Health.
“We’ve got a little bit of stability now, there’s obviously little niggles here and there.
“But we also don’t trust that things are going well, we’re always waiting for something bad to happen.”
All the family can do now if wait for a heart to save little Evie’s life.
Difficult conversations
Chloe said she’s been documenting Evie’s journey on Facebook, Instagram and TikTok to raise awareness about organ donation.
“It’s the only thing I can do in this situation, I have no control.”
She acknowledged that it’s understandably a taboo subject, especially when it comes to children.
Though you can donate organs while you are alive, most organ and tissue donations come from people who have died, according to the NHS.
“People don’t like to think about children dying and I totally understand that, because I don’t like to think about it,” Chloe said.
But she hopes people engaging with Evie’s journey will see a different aspect of the sensitive subject.
The mum hopes to make them question: “Would they accept a donated heart and if so, would they also give that same gift?”
Children in need of an organ transplant tend to have longer waits for organ donations, on average about a year to 18 months. But children can go up to two years waiting for a transplant.
More about organ donation
THE LAW around organ donation in England changed in 2020, to allow more people to save lives.
You still have a choice if you want to be an organ donor when you die.
But in England, now that the law has changed, it’ll be considered that you agree to become an organ donor when you die, if:
- You are over 18
- You have not opted out;
- You are not in an excluded group
Excluded groups are people under 18, people who lack the mental capacity to understand the new arrangements and take the necessary action, visitors to England and people who’ve lived in England for less than 12 months.
You can choose to opt in or opt out by recording your decision on the NHS Organ Donor Register.
You can choose to amend or withdraw your decision at any time.
Who can donate?
To donate organs after death, a person needs to die in hospital in specific circumstances.
You can also become a living donor and donate your kidney, part of liver or tissue and bone.
Parents and guardians can register their children, and children can register themselves.
Children who are under 12 in Scotland and under 18 in the rest of the UK at the time of registration will require their parent or guardian’s agreement for donation to take place.
You can become a donor if you have:
- Creutzfeldt-Jakob Disease (CJD)
- Ebola virus disease
- Active cancer
- HIV – though rare cases, the organs of donors with HIV have been used to help others with the same conditions
Read more on the NHS Organ Donation Portal.
Chloe said: “People say to us, ‘well, you must be next on the list’.
“However, it doesn’t work like that, because you’ve got to match by size, you’ve got to match by blood after that and then you’ve got to match by tissues.
“So it’s just not as simple, especially when it comes to heart transplants.”
Finding the right match for Evie is even harder, as she’s just four years old.
But once a donor is found and Evie’s body doesn’t reject her new heart, it would mean she’d have years, decades more with her family, without the need of a machine to keep her going.
“Donated hearts and donated organs in general aren’t a cure, they’re an extension of life,” Chloe explained.
“The average you get given by the transplant coordinators is 25 years with a donated organ.”
After more than a year in hospital, Evie has seen other children in her ward get transplants.
“She’s so clever, she knows why we’re there,” Chloe said.
“We’ve explained to her that she needs a new heart and when she gets a new heart, we can start the recovery and get home.”
‘She brings light into our lives’
Evie was diagnosed with dilated cardiomyopathy when she was just four months old, after getting bronchiolitis – this is a common chest infection that affects babies and children under the age of two.
Chloe said the tot was “working a bit harder to breathe, was pale, a bit sweaty” and took her to hospital.
Though she was given antibiotics, Evie’s symptoms weren’t improving.
Chloe remembered her little one being agitated and not feeding very well, so she took her back to hospital.
A chest X-ray revealed that she had an enlarged heart.
She was transferred to Freeman Hospital the following day, where she was diagnosed with the heart condition.
What is dilated cardiomyopathy?
Dilated cardiomyopathy (DCM) is a disease of the heart muscle which makes the muscle walls become stretched and thin.
As the thinner walls are weakened, this means the heart can’t contract properly to pump blood around the rest of the body.
DCM affects the lower left chamber of the heart. The enlarged muscle walls give the heart a rounder shape rather than its usual cone shape.
According to the British Heart Foundation, the most common signs of the condition include:
- tiredness
- chest pain
- shortness of breath
- swelling of your feet, ankles, stomach and lower back
- palpitations – when your heartbeat feels like it’s fluttering, pounding or thudding in your neck or chest
At first, Evie responded brilliantly to her medication and was able to leave the hospital after two weeks.
Not long afterwards, the UK went into lockdown because of Covid.
Isolating though the situation was, it meant Evie was able to grow and become a bit more stable in a protective bubble.
But towards the end of 2022, Chloe noticed that the tot wasn’t eating very much and not gaining weight either.
And by February that year, Evie was back in hospital with heart failure.
Despite being there for so long, Evie still remains her lively self.
“She’s very, very sassy, she thinks she’s 14.
“She’s just obsessed with makeup and colouring in – she’s very creative and artistic.
“And she’s just so funny and so sweet-natured as well.”
Though little Evie’s big personality can be a handful to manage in a hospital setting, Chloe says she wouldn’t have it any other way as it makes the days go by quicker.
“It’s when she’s not well that it really hurts a lot.
“I do see her happy and I think I’ll take any sort of rubbish as long as she’s happy.
“But it does break your heart as well. You have those moments where you think it’s not fair.
“She brings that light into our lives.”
A big brother’s love
Evie has an older brother Theo who’s in school, so her parents take turns being with her in at Freeman Hospital in Newcastle throughout the week.
The family live in Middlesbrough, an hour away from the hospital, so their system involves one parent being with Evie for three days and the other with Theo, and then switching over.
Theo comes to visit his little sister over the weekends.
“I wouldn’t recommend this for a relationship because me and my husband are like passing ships, but we’re just doing our best for the kids,” Chloe said.
She and her husband David have been off work since Evie’s been in hospital.
“It is a financial strain, especially if you’re on and we’re still in the same position,” the mum acknowledged.
Their local netball club last year put together a fundraiser to help the Green family, which brought a little relief.
Chloe went on: “We know this isn’t going to be a permanent situation. We just don’t know how long it’s going to be.”
To join the organ donor register visit www.organdonation.nhs.uk
