It’s the noise we all fear. First a screeching alarm, piercing the sterile corridors. Then a rush of movement.
It means one thing – a child is dying.
I sit with other parents in the family room, a no man’s land of life and death where we all wait hopefully and fearfully for news.
As the alarm sounds, we all jump up. Then I realise – it’s Lucie, my daughter, our first child. She is two and tiny and so kind.
I’m outside her hospital room now, my husband Phil is already there. Doctors are working on her, trying to bring her back.
She’s had a heart attack, her little heart no longer beating. I can’t bear to watch so I rush away, out of intensive care.
For nearly an hour, doctors work on my precious girl, who loves music, Peppa Pig and her baby brother, Jude.
They shock her body 11 times with a defibrillator.
I think she must have died, it seems like the only outcome. But incredibly, after 52 minutes of nothing, her heart beats again.
By some miracle, she’s saved.
Phil would later tell me he watched doctors pound on our daughter’s small chest with their bare hands as they battled to revive her.
We owed them everything.
But we weren’t out of the woods yet – as we’d soon find out.
Lucie had been a happy and sociable baby. She started nursery at 10 months old and reached all the milestones she was supposed to.
She never complained about anything. But as her second birthday approached, she appeared to stop wanting to walk.
Instead of running around, she liked to sit and look at books.
We thought that was just her.
Her birthday came and went, but before long, she started suffering from chest infections. They were endless, one after another.
At the time, I was pregnant with my son Jude.
We started to worry that something might be wrong, however, a doctor reassured us that Lucie didn’t need a chest X-Ray.
But we also became concerned about her hands and feet – they were very cold. And at one point, her face and legs became puffy.
I took my little girl to the doctor’s again. This time, the GP who saw her immediately realised that something was wrong.
He didn’t go into too much detail because he didn’t want to scare me. But he could feel that my daughter’s liver was enlarged.
We were sent straight to hospital, where Lucie underwent tests.
Doctors told us that her heart was huge – they used their palms to show me and Phil, 45, just how big it was.
They said it was barely pumping.
Our beautiful toddler had dilated cardiomyopathy (DCM), which is where the heart becomes enlarged and can’t pump blood effectively.
It’s a rare form of heart disease – a condition that 70 per cent of the British population don’t realise is a childhood disease, according to new research by Great Ormond Street Hospital Children’s Charity.
Lucie’s diagnosis in March 2011 came as a massive shock.
It was around my 20-week pregnancy scan with Jude. I felt so guilty, like I was replacing a child. I was in tears over it.
We were asked about our family’s medical history – had any children dropped down suddenly? They hadn’t.
But terrifyingly, that could have happened to our girl.
Lucie was given 10 different types of medication and, when she came back to our Surrey home from hospital, life returned to normal.
We knew there was a chance she’d need a heart transplant if her condition deteriorated, but we remained hopeful.
Lucie loved socialising at nursery, attending monkey music class, playing in the park and visiting Peppa Pig World.
And when Jude was born that August, she was a proud big sister.
She was delighted by her baby brother, and never once jealous.
During that time, we had a defibrillator that we carried around with Lucie in case anything happened. But for months, nothing did.
We had a nice Christmas together – it was Jude’s first – but in the New Year, Lucie caught a cold that just wouldn’t go away.
I would walk into a room to find her asleep on the floor.
Soon after, she collapsed and was hospitalised.
And then, Lucie had her heart attack.
I was sitting in the family room at the Royal Brompton Hospital in Chelsea, London, with my brother and sister-in-law when I heard the emergency alarms sound. Phil was already in the ward.
In these situations, all the parents rush to see who the alarms are for.
I realised it was Lucie.
Fortunately, she had the intensive care doctors around her already. She’s always been quite lucky in terms of where she’s been.
I had to go out, I was in shock.
My brother took me into the main corridor.
We thought Lucie had died, that that was it. But after nearly an hour working on my girl, the doctors managed to bring her back.
It was a miracle.
But afterwards, Lucie’s body had to be cooled down. Doctors also thinned her blood – it was coming out of every hole in her body.
We feared she could have brain damage.
She was put on an ECMO (extracorporeal membrane oxygenation) machine, which oxygenates the blood outside the body.
She was then transferred to Great Ormond Street Hospital in London. Without the machine, she wouldn’t have survived the journey.
There, we had to wait a week for doctors to assess Lucie. Luckily, although her brain did shrink slightly, she was given the all-clear.
During her time at GOSH, she had a stent placed in her heart.
She also went on a Berlin heart, a life-saving pumping device that takes over the work of one, or both, sides of the heart.
She had to have two fitted because of her condition. Medics would check them 24/7 in case any bubbles developed.
She was so weak, so sick.
Consultants would later tell me she was about as sick as you can get.
All the while, my son was with his grandparents.
Phil and I were staying in hospital accommodation for parents and during the week Phil would see Lucie, then go off to work.
I would then sit in intensive care all day. When Phil came back, I would get a cup of tea and he would sit with our daughter.
On Friday nights, I would go off to Essex, where Jude was, for a day. After I returned to the hospital, I’d switch with Phil and he’d go.
By the time Lucie was on the Berlin Heart devices, we knew she needed a transplant. And unbelievably, we only had to wait eight days for one.
We were so shocked, it was so quick.
Anything can happen while children are waiting for a heart. They can suffer strokes or bleeds on the brain.
But here Lucie was, being offered the greatest gift.
I felt really guilty because some other children had been in the hospital, living on Berlin hearts, for longer.
I also knew someone else had gone through the loss of a child and made the selfless decision to donate their heart.
We were so grateful.
I was always a bit squeamish about organ donation before. You don’t actually think about it until you need an organ.
But if you need an organ, you’re going to say: "Yes, I want it."
And we’re all organ donors now.
After Lucie’s transplant, everything was going really well. But after a couple of days, the team noticed something wasn’t right.
She was suffering from rejection, which can be life-threatening.
Lucie had to be put back on the ECMO machine to allow her little body to rest and get used to its new heart.
After five days, doctors wound down the machine. They needed to see if her new heart could work on its own.
I watched in terror, but fortunately it did.
Today, Lucie has just turned 10 and she’s doing great.
She’s doing well at school and people who meet her don’t even realise what she’s been through.
She is a real girlie girl and still so kind.
She loves art, writing, fairies and L.O.L. dolls.
Lucie celebrated her birthday yesterday – something she might have never seen – and we bought her an L.O.L. dolls house.
She also loves going up to the hospital for check-ups. After everything she’s been through, she’s not scared of dying or death.
My girl was so lucky to receive the treatment she did at GOSH.
The doctors were absolutely amazing.
She also owes her life to research into heart disease.
If there wasn’t any, she wouldn’t be here today.
She’ll always be on medication – including anti-rejection drugs – and research into this has improved over the years.
Since Lucie’s transplant, we have had another daughter, Isobel.
She’s now four – three years younger than Jude.
Heartbreakingly, she also has heart disease.
Her diagnosis showed us it was genetic.
It has been stressful, but because of everything Lucie went through, the GOSH doctors caught Isobel’s condition early.
Luckily, she has a milder case. She had no signs at all before her diagnosis, she was so full of energy.
Isobel will also have to take medication for life. But because Lucie also takes it, she thinks it’s a ‘big girl thing’ to do.
Ten years ago, Phil, who runs his own electrical business, and I didn’t even know about dilated cardiomyopathy.
But it nearly claimed Lucie’s life.
We don’t know what the future will hold for our daughter – but doctors say to me, "Don’t panic so much about the future."
Maybe one day she’ll even have a small mechanical heart.
Childhood diseases killing 5 kids a day
Around five children die from a rare disease every day.
But more than half of us cannot confidently name just ONE childhood rare disease, figures released by GOSH Children’s Charity show.
This includes heart disease, which a staggering 70 per cent of the British population don’t know is a childhood condition.
It also includes arthritis, dementia, brain tumours and glaucoma.
The figures were released by last week, on Rare Disease Day 2019.
The charity’s Director of Grants and Impact said a third of children suffering from a rare disease will die before their fifth birthday.
However, she said paediatric health research is "severely underfunded".
The charity wants to raise awareness of childhood rare diseases because it is "aiming to invest over £10 million over the next year to fund world leading researchers to push forward in their discovery of new treatments and cures".
It has called on the public’s support to raise "critical" funds to help progress life-changing research at GOSH and institutions across the UK.
Kiki Syrad, the charity’s Director of Grants and Impact, said: “Great Ormond Street Hospital treats a huge number of children with rare diseases and for many of these, research is their only hope.
"A third of children with a rare disease will die before their fifth birthday yet paediatric health research is severely underfunded, receiving only five per cent of charitable and public funding in the UK each year.
“We would encourage the public to support us and help enable the world leading researchers we fund to progress their research and help to improve outcomes for children with rare diseases."
- To help fund vital research at GOSH Children’s Charity, visit www.gosh.org
- For the latest information on the Mirror’s ‘opt-out’ organ donation campaign, click here
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