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Brave Ibby Green, 4, has been in hospital for more than a year. She has only one wish.
The “cheeky” child was first admitted to hospital in February 2023, needing a heart transplant.
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She has been kept alive by a machine ever since she was diagnosed with dilated cardiomyopathy (a condition in which the heart’s walls become too weak to pump blood) when she was four months old.
The 4-year-old has spent a quarter of her life in the hospital, her mother said. chloe told Sun Health.
Evie seemed to be doing well on medication, but doctors started noticing warning signs of heart failure towards February last year.
Her condition rapidly deteriorated over about two days.
“All of a sudden, my daughter became really lethargic and exhausted and was sleeping all day,” Chloe said, remembering how unlike herself her daughter was.
Evie’s mother knew the situation was serious because she often “played hard” even though she wasn’t feeling well.
She is currently stable on a Berlin Heart, which is used to support children with severe heart failure.
However, this machine carries risks of stroke and infection.
This little baby was already suffering from multiple infections and in September 2023 was battling deadly sepsis.
“It was a really bad patch for us,” said mom Chloe.
She also has a stent inserted to keep her heart functioning.
“It was a really tough journey from April to September last year,” Chloe told Sun Health.
“It’s a bit more stable now, but obviously there are little issues here and there.
“But we don’t believe that things are going well. We’re always waiting for something bad to happen.”
All the family can do now is wait for a heart to save little Evie’s life.
difficult conversation
Chloe said she was 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 can’t control it.”
She acknowledged that it’s understandably a taboo topic, especially when it comes to children.
Although living people can donate organs, most organs and tissue donations come from deceased people. According to the NHS.
“People don’t want to think about their child dying, and I don’t want to think about that either, so I understand that,” Chloe said.
But she hopes those who join Evie’s journey will see a different side to this sensitive subject.
The mother wants them to wonder, “Would they accept a heart donation, and if so, would they make the same gift?”
children in trouble For organ transplants, the waiting time for organ donation tends to be longer, averaging about 1 year to 18 months. However, children can wait up to two years for a transplant.
Learn more about organ donation
Organ donation laws in the UK were amended in 2020 to help more people save lives.
You still have the option of whether you want to be an organ donor when you die.
However, in the UK the law has changed and the person is considered to have consented to become an organ donor at the time of death if:
- you are over 18 years old
- You haven’t opted out.
- you do not belong to an excluded group
Excluded groups are people under the age of 18, people who lack the mental capacity to understand the new arrangements and take the necessary actions, visitors to the UK and people who have lived in the UK for less than 12 months. .
You can choose to opt-in or opt-out by recording your decision. NHS organ donor register.
You can amend or withdraw your decision at any time.
Who can donate?
For organs to be donated after death, a person must die in a hospital under certain circumstances.
You can also become a living donor and donate a kidney, part of your liver, tissue or bone.
Parents can register their children, or children can register themselves.
Children who are under 12 years of age in Scotland or 18 years of age in the rest of the UK at the time of registration will need parental or guardian consent to make a donation.
You can become a donor if you meet the following conditions:
- Creutzfeldt-Jakob disease (CJD)
- ebola virus disease
- active cancer
- HIV – In rare cases, the organs of people infected with HIV are used to help others with the same condition.
For more information, NHS Organ Donation Portal.
Chloe said: “People say to us, ‘Well, you’re next on the list.’
“But it doesn’t work that way, because you have to match on size, then match on blood, then match on tissue.
“So it’s not that simple, especially when it comes to heart transplants.”
Evie is only 4 years old, which makes finding a perfect match even more difficult.
But if a donor is found and Evie’s body doesn’t reject the new heart, she could be with her family for many more years, even decades, and won’t need a machine to keep her going. .
“I donated heart And generally donated organs are not a cure, they are an extension of life,” Chloe explained.
“The average lifespan for organ donation offered by transplant coordinators is 25 years.”
After more than a year in the hospital, Evie has watched other children on the ward undergo transplants.
“She’s so smart that she knows why we’re there,” Chloe said.
“We explained to her that she needed a new heart and that once she had a new heart, she could begin her recovery and go home.”
“She brings light to our lives.”
Evie suffered from bronchiolitis and was diagnosed with dilated cardiomyopathy when she was just four months old. Bronchiolitis is a common chest infection that affects infants and their children under the age of two.
Chloe said the baby was “a little having trouble breathing, looked pale and was a little sweaty” and took her to the hospital.
Despite being given antibiotics, Evie’s symptoms did not improve.
Chloe recalled that her child was excited and not eating very well, so she took him home to the hospital.
A chest X-ray revealed that her heart was enlarged.
The next day, she was taken to Freeman Hospital, where she was diagnosed with heart disease.
What is dilated cardiomyopathy?
Dilated cardiomyopathy (DCM) is a disease of the heart muscle that causes the muscle walls to stretch and become thinner.
A weakened thin wall means the heart is unable to contract properly and pump blood to other parts of the body.
DCM affects the lower left cavity of the heart. The enlarged muscular wall gives the heart a more rounded shape rather than the usual conical shape.
by british heart foundationthe most common symptoms of this condition are:
- tired
- chest pain
- shortness of breath
- Swelling of the feet, ankles, stomach, and lower back
- Palpitations – when your heart feels like it’s pounding or pounding in your neck or chest
At first, Evie responded well to medication and was able to be discharged from hospital after two weeks.
Shortly thereafter, the UK went into lockdown due to the coronavirus.
Although the situation was isolated, it meant that Evie was able to grow up in a protective bubble and find a little more stability.
However, towards the end of 2022, Khloe noticed that her baby wasn’t eating much and wasn’t gaining weight.
By February of that year, Evie was hospitalized again with heart failure.
Even though she’s been there for so long, Evie is still her vibrant self.
“She’s very sassy and thinks she’s 14 years old.
“She’s obsessed with makeup and coloring and is very creative and artistic.
“And she’s also very funny and has a very sweet personality.”
Little Evie’s big personality may be a handful to manage in a hospital environment, but Chloe says she wouldn’t have it any other way as the days pass too quickly.
“When she doesn’t feel well, it hurts a lot.
“I see her happy and I think she’ll take on any crap as long as she’s happy.
“But it also breaks your heart. There are moments when you think it’s unfair.
“She brings light into our lives.”
brother’s love
Evie has an older brother, Theo, who attends school, and her parents take turns attending Newcastle’s Freeman Hospital throughout the week.
The family lives in Middlesbrough, about an hour away from the hospital, and one parent stays with Evie for three days, the other stays with Theo, and then they switch places.
Theo comes to see his sister on the weekend.
“My husband and I are like ships that come and go, so I don’t recommend this relationship, but we’re just trying to do what’s best for our kids,” Chloe said.
She and her husband, David, have been off work since Evie was hospitalized.
“It’s a financial burden, especially if you’re healthy and we’re in the same situation,” the mother admitted.
A local netball club held a fundraiser last year to help the Green family, providing some relief.
Chloe continued: “We know this situation is not permanent, but we don’t know how long it will last.”
To join the Organ Donor Registry, please visit here www.organdonation.nhs.uk
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