Charlie Gard’s parents receive heartbreaking advice from mum who had to make the devastating decision to turn son’s life support machine off after baby death judgment
Lauren Raynsford's baby Dylan died in her arms
THIS heartbreaking picture shows tiny Charlie Gard’s hand clutching a pendant of St Jude, the patron saint of hopeless causes.
It was released yesterday by the eight-month-old’s parents – a day after a judge ruled doctors SHOULD withdraw their son’s life support.
Their caption simply read: “No words . . . just devastation.”
Dad Chris Gard and mum Connie Yates, from Bedfont, West London, have vowed to fight on.
And cash from well-wishers continues to roll in as they battle to take Charlie, who has a rare genetic disorder, to the US for trial treatment.
Eight years ago Lauren Raynsford, 30, from Rayleigh, Essex, made the decision to turn off a life-support machine so her baby Dylan could die in her arms.
Here, she offers her advice in a letter to Charlie’s parents – while a radio host speaks out against the ruling and a retired judge sets out the legal considerations.
Dear Connie and Chris,
MY heart is breaking for you right now. What you are going through is every parent’s worst nightmare.
Of course you want to hold on to your lovely little boy and of course you want to fight to give him every chance to live.
But sometimes, as hard and as painful as it is, you have to look at the bigger picture and think about the best way forward for your baby.
Eight years ago I was asked the impossible question by doctors at Basingstoke hospital.
Would I prefer to let my tiny baby Dylan die on the life-support machine or would I rather turn it off and let him pass away in our arms? He had only been born 14 hours earlier.
Our circumstances were different to yours. We didn’t have the agony of thinking there could be a chance for survival out there.
We didn’t have the time that you have had to think it over, and I think that has made your situation more difficult in some ways.
I’d had an exhausting 65-hour labour and when Dylan finally arrived, at 3.51am on August 8, 2008, he came out screaming his head off.
I didn’t imagine there could be anything wrong with my perfect little man.
Not long afterwards though he was frothing at the mouth and making grunting noises.
He was taken to the special care baby unit but I was assured he would be back, right as rain, within an hour.
When he didn’t return, a nurse called Ian told me I had tested positive for Group B Strep, a bacteria that can be fatal for newborn babies.
As I was there, with Dylan clutching on to my finger through the hole in his incubator, all these alarms sounded and I was rushed out of the room.
He was just seven hours old.
Ian reassured me he was just being “a little monkey” and trying to scare us, but Dylan had suffered the first of two cardiac arrests.
The second happened a few hours later and Ian resuscitated him, telling us afterwards he would never have forgiven himself if he let him die without us being at his side.
We later discovered Ian had lost a daughter himself.
Half an hour of chest compressions couldn’t bring him back though, and Dylan was put on a life-support machine.
With no sign of brain activity, we sent for the hospital priest to have Dylan baptised. But in the end, there was no time.
There was no time to think about our decision, either.
We were asked the terrible question — were we ready to switch the machine off? And after we gave our answer, the end would come very quickly.
My husband Stevie agreed we should turn the life support off rather than wait for the inevitable over the next few days, but I was in such a state of shock I couldn’t speak.
All I could do was nod.
The doctors removed all the tubes and placed him in my arms, and my beautiful baby died peacefully 20 minutes later.
Afterwards, I was able to spend some time with him, bathing him and holding him, doing all the things I should have been doing as a new mum.
We took imprints of his hands and feet, cut a lock of his hair for his memory box and we also had him baptised.
In the months after he passed away I tortured myself with wondering whether we should have made a different decision.
Did we turn the life support off too soon? Was there a chance he might have recovered?
Then, through meeting with doctors, I discovered Dylan had septicaemia in both legs, so they would have had to be amputated.
His brain function was so low that even if he had survived he would have been in a vegetative state for the rest of his life.
He wouldn’t have been able to dress himself or walk or feed himself. The only sign of life would have been in his eyes, and that is no life for any child in my opinion.
And while I would obviously have cared for him as long as I lived, what would happen to him after I died?
Dylan passed away in my arms, knowing how much he was loved.
We celebrate his birthday every year, and his sisters, Jasmine, nine, Jessica, seven, and Bella-Rose, six, blow out the candles on his cake.
Jessica’s middle name is Nevaeh, which is “heaven” backwards, and she says her big brother is in heaven looking after her, just as all big brothers do.
I have found support since with other parents who have lost their children and from the charity Group B Strep Support, without whom I would have crumbled a long time ago.
The next few days or weeks are going to be so tough for you both, but I really would urge you to make the most of this time with Charlie.
Take as many pictures as you can, hold his hand, stroke his hair.
Get all your family members to come and say goodbye.
Tell him how much you love him.
It is going to be the hardest thing you’ll ever go through, but now is the time to appreciate however long you have with Charlie.
And if you ever need a shoulder to cry on, or a listening ear, please don’t hesitate to get in touch.
Love, Lauren
For more information on Group B Strep, go to
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'CHILD IS PUT FIRST'
RETIRED family court judge Sir Mark Hedley ruled in 2004 that premature baby Charlotte Wyatt should have her life-support machines turned off following a battle between doctors and her parents.
Yesterday, he explained the role of the court in such situations.
He said: “These cases happen from time to time. They are not common but they are not quite as rare as you might think.
“The reality is that no parent actually owns their child, in the sense that they can make unfettered decisions about it.
“We do have some limited accountability for families and one of them relates to end-of-life decision making.
“Who can blame a parent for wanting to go for everything there is?
“But there are always two sides to the argument and at the end of the day, where there is no agreement, then it’s a matter of judicial decision.
“The law is very, very simple – the court is simply required to act with the child’s best interests as its paramount consideration.
“And of course that is a massive value judgment.
“And of course there are elements of morality and so on involved in it.
“There are fundamental issues like, for example, as I said in the Charlotte Wyatt case, any philosophy of life that doesn’t have a proper place for death, which comes to us all, is an inadequate philosophy.
“And you simply have to be prepared to confront the fact that some children are going to die and that there will hardly ever be a parent who is a willing party to that.”
'COURT RUINED THREE LIVES'
RADIO presenter Nick Ferrari yesterday said the judge in Charlie’s case got it wrong.
Listeners heard how his family were told his own brother Simon would be a “vegetable” after a car crash as a teenager.
But his mother refused to allow his life support to be turned off – and after brain surgery Simon went on to live another 34 years.
Nick said: “Doctors do get it wrong. I had a phenomenally close relationship with my brother. Effectively, I helped him to walk again.
“I was nine, he was 17. I used to push him around in a wheelchair.”
He added that the judge had “wrecked three lives”.
He explained: “Barring an appeal, Charlie is not going to make it. But mum and dad will go to their graves always wondering, ‘What if? What if we’d been allowed?’.
“Would it really hurt that much to let Charlie have one last chance?”