Yorkshire parent's appeal to help others after birth of baby Edie with rare condition

Facing every parent's worst nightmare, Helen Stapleton had known only that she wanted to be by her daughter's side.

Helen Stapleton and baby Edie, of Doncaster, who are backing an appeal by The Sick Children's Trust after the charity supported them through Edie's hospital stay. Image: Simon Hulme

Baby Edie Bea, now five months, was born with a rare kidney condition which meant she might not have survived those precious first few days.

As little Edie is christened on Sunday, her family's thoughts are with those who will still yet be facing the same harrowing ordeal.

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"We’re thinking about the families who will be having their baby’s first Christmas in hospital," said Ms Stapleton.

Baby Edie, born with a rare condition which affects just one per cent of children, spent 11 days at Sheffield Children's Hospital.

"Though, with the support of The Sick Children’s Trust they will be able to wake up and be with their child on that special day."

Rare condition

Edie was born in July, with a rare condition called hydronephrosis that affects just one per cent of babies.

It means a dilation of the kidney, though for Edie it is both, with additional challenges including double kidney systems on both sides, dilated ureters and renal damage.

Baby Edie Long, now five months, is to spend her first Christmas at home after being born with a rare condition. Her family, so supported by The Sick Children's Trust, are backing an appeal to help other families who may wake on Christmas morning in hospital. Image: Simon Hulme

Her parents, Ms Stapleton and Brian Long from Doncaster, had been warned at the 20-week scan that something was amiss.

The pregnancy might not progress, they were told, her lungs might not develop as they should, and there was talk of a transplant.

The best they could hope for, doctors said, was a very poorly baby.

"We had waited so long for this and the thought was too much to bear," said Ms Stapleton, aged 35. "We had hope, get our baby girl here and they would do whatever was needed."

Brian Long and Helen Stapleton with baby Edie, now aged five months, who was born with a rare kidney condition. Image: Simon Hulme.

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Early arrival

Edie arrived early, at 38 weeks, weighing 7lbs and 11oz, and was taken to intensive care at Sheffield Teaching Hospital before being transferred to Sheffield Children's Hospital.

"We didn’t really know what to expect after Edie arrived," said Ms Stapleton. "All we knew was that she needed to be at Sheffield Children’s for as long as she needed their care.

"We would do whatever it would take to be with our baby on every step of her journey. We didn’t know how long we’d be in hospital and we were a long way from home.

"Trying to figure out how it was all going to work was a nightmare. The thought of leaving my precious first baby was too much."

The family would have faced a drive of an hour-and-a-half each way to the hospital, or sleeping in the single chair by Edie's bed.

"I was worrying about all these little things that really shouldn’t matter when your baby is in hospital," added Ms Stapleton.

"That is unless someone else swoops in to take care of it for you. Fortunately for us, someone did."

Charity support

The Sick Children’s Trust is the charity that gives families with a seriously ill child in hospital a place to stay close to their bedside, and offered a base for the family for 11 days.

The couple were given a room at Treetop House, on the hospital's top floor, before being moved to Magnolia House on the same floor as Edie.

There were nights, says Ms Stapleton, when she couldn't sleep. In the early hours of the morning she would slip into her daughter's room, just to sit next to her.

Instead of hours spent driving on the motorway, she was able to spend that precious time with Edie. It meant the world, not to have to leave her newborn baby.

"Even though we knew Edie would be in hospital after she was born, nothing quite prepares you for the reality of it," she said.

"It’s so easy to focus on what might happen and all the uncertainty that the future holds rather than focusing on the fact you have a baby to enjoy so many new things with."


The family is now back home in Doncaster, although Edie remains under the care of Sheffield's Children's Hospital.

They are backing an appeal from the Sick Children's Trust to give the Gift of Togetherness to a family with a child in hospital this Christmas-time.

"You don’t ever think you’ll be the one needing to use a charity," said Ms Stapleton.

"We’d never heard of The Sick Children’s Trust before Edie was born, yet it is so obvious why the charity exists.

"Without it, a terrible time would’ve been unbearable."

Gift of Togetherness

The family are backing an appeal to Give the Gift of Togetherness to a family with a sick child in hospital by donating £30 to The Sick Children’s Trust.

The charity gives over 3,500 families with a seriously ill child in hospital a place to stay when they need it most, at a cost of £30 a night.

Chief executive Jane Featherstone said: “Sadly, not every child will be snugged up in bed at home on Christmas Eve, excitedly waiting for Father Christmas to deliver their presents.

"Hundreds of children across the country will be in hospital, and every one of them should be with their family at Christmas.

“The £30 gives a family so much more than just a roof over their heads, it gives them someone to talk to and a calm place to rest. Most importantly, it will mean they can spend Christmas together.”

To find out more visit sickchildrenstrust.org/christmas