The life-or-death battle over baby Charlie Gard has captured
hearts and sparked debate from the White House to the Vatican.
But for one mother, the case is an inescapable reminder of
her own decision to allow her child – who is also battling a mitochondrial
disease – to die.
Two years ago, Chloe Harris made the agonising decision to
sign a “Do Not Resuscitate” notice for her daughter Bailey-Rose Bickerton, who
has cytochrome oxidase deficiency.
Like Charlie, whose future is being decided by the High
Court, five-year-old Bailey-Rose’s disease has left her brain damaged, unable
to walk or talk and her life is punctuated by violent seizures.
She was not expected to live past three and experts say she
will never get better.
And while Chloe, 22, has come to accept the reality of her
daughter’s prognosis, she says Charlie’s high-profile case means some friends
wrongly think Bailey-Rose can be cured.
The mum has been inundated with suggestions that her
daughter could benefit from new treatment in the US that parents Connie Yates
and Chris Gard want Charlie to have.
The misguided comments are painful for Chloe, but the mum of
three refuses to justify her decision to allow Bailey-Rose to slip away when
the time comes.
Speaking exclusively to the Sunday Mirror, Chloe said: “I
won’t apologise for doing what’s best for my daughter.
“It was an extremely hard decision to sign the DNR notice
and not one I took lightly.
“The general public have no idea how complex mitochondrial
disease is. There is a lack of awareness and now people seem to think there is
a miracle cure.
“I want my daughter to be comfortable, pain-free and, most
importantly, as happy as she can be. We feel she wouldn’t want to pass away
horribly, in pain with foreign objects in her body, so while I respect
Charlie’s parents’ position, my own decision still makes perfect sense for our
daughter.”
Bailey-Rose was born with a severe infection and medics at
Liverpool Women’s Hospital battled to help her survive the night.
At three months, she was diagnosed with cytochrome oxidase
deficiency, having inherited the genetic disease from parents Chloe and Lee
Bickerton, 33. The illness is a form of mitochondrial disease and affects
around one in 65,000 people. It means Bailey-Rose has abnormalities in her
heart and kidneys, high levels of lactic acid in her blood and weak muscles.
Chloe, who also has Arabella, two, and 11-month-old Auden
with Lee, explained: “Medics told us our girl was unlikely to live past three
and she’d never be able to walk, talk or hear.
“She was severely brain damaged and would need round-the-clock
care. To say we were heartbroken doesn’t begin to describe it.”
Lee and Chloe had a one-in-four chance of passing the
condition to their two younger children, but tests during both pregnancies came
back clear.
Chloe became a full-time carer for her wheelchair-bound daughter
and the pair shared a bed so the mum could keep an eye on her. Increasingly
violent seizures saw the tot come close to death several times in her first two
years. In 2015, when Bailey-Rose was three, a build-up of acid in her
bloodstream meant her kidneys were shutting down.
Chloe recalled: “She was extremely distressed, thrashing
around and trying to bite herself. Doctors were trying to find a place to
cannulate her but struggling because she’s had so many IV drips. The whole
thing was very traumatic for her.”
Bailey-Rose pulled through, but it was after this that Chloe
and Lee, of Tameside, Greater Manchester, decided to sign the DNR notice.
Chloe said: “Doctors made it perfectly clear Bailey-Rose
would not live much longer.
“She has been through so much and she is a human being. Lee
and I decided we did not want doctors pummelling her chest or stabbing at her
just to keep her alive so we can have her that bit longer.
“Bailey-Rose can’t speak for herself. As a mother, I had the
ability to make sure that she was comfortable.”
The notice means doctors will not give Bailey-Rose CPR or
advanced cardiac life support, allowing her to die naturally should the event
arise.
Both parents’ families fully supported their decision. Since
signing the paperwork, Bailey-Rose’s increasingly regular and violent seizures
mean she and her family spend much of their time in and out of Tameside
Hospital. On two occasions, at three and five years old, Bailey-Rose came close
to passing away.
Chloe recalled: “Watching her, I had no regrets about the
DNR notice.
“I just wanted her to know everything was okay. I had
conversations with her in my head, telling her: ‘If you need to, you can go
now’.”…
The mum tries to avoid reading stories about other “mito-warriors”
– children battling mitochondrial diseases – as she finds them “harrowing”.
But the worldwide attention on Charlie Gard’s case – Donald
Trump and The Pope have offered support to the tot’s family – is impossible for
Chloe to ignore.
She said: “I feel Charlie’s case is misinforming the public
about mitochondrial disease. They do not understand that it’s an umbrella term
for dozens of diseases and each case is different.
“MD didn’t get enough coverage in the first place and now,
suddenly, people say ‘Oh there’s a cure for it now’. They don’t know what I
have been through and assume that something can be done for Bailey-Rose and it
can’t…
Despite her own heartache Chloe has “nothing but respect”
for the decision of Charlie’s parents to seek treatment – and has offered her
support on Facebook. She added: “All I can give them is empathy. I know how
they’re feeling, it’s hard and it’s scary. Your heart breaks. I have to go
through a process of grieving while my daughter is still here and they are probably
doing that for their son.”
http://www.mirror.co.uk/lifestyle/health/i-know-never-cure-mum-10805334
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