Anguish for parents of ‘sickest baby’ in the region
COVID RULES STOP OVERNIGHT STAYS
BY All they want to do is cradle their newborn baby in their arms.
But Bedlington parents Carly Walker and Ryan Murphy have been forced to watch from the sidelines as their daughter fights for her life.
Little Ayda Faith Murphy was born prematurely on March 31, weighing just 4lbs, at Newcastle’s Royal Victoria Infirmary.
Rushed for her first operation straight after birth and another at just four days old, she’s battling terrifying odds after being diagnosed with a series of incredibly rare birth defects.
An almost unique variant of gastroschisis, a defect of the abdominal wall, has left her intestines pushing up into her chest – a condition doctors estimate is suffered by no more than 10 babies worldwide.
Meanwhile, her heart appears to have flipped over and lies on the wrong side of her chest, while she’s receiving oxygen from a machine due to her underdeveloped lungs.
Coronavirus restrictions mean her terrified parents have had to visit their little girl separately, only able to touch her around the mass of tubes and equipment which are helping her fight for life.
Carly, 33, said: “They’ve told us she’s the poorliest baby in the North East right now.
“Her heart has completely moved left to right, and flipped over, the doctors don’t know how it’s happened, it’s crazy.”
The parents had been warned at their 20-week scan that Ayda was likely to suffer complications. But they were determined to fight to see their little girl, who had brought a ray of sunshine into their lives already, as Carly had found out she was pregnant shortly after the death of her mum, in August.
“She’s my
Carly said.
“We knew there would be complications, but we didn’t know they would be this severe.”
As their “little fighter” slowly comes round after the surgeries, they know she’s still at serious risk, but they’re hoping she’ll be able to gradually get stronger and say she’s doing “amazingly” already.
Yet despite wanting nothing more than to stay by Ayda’s side, they’ve had to drag themselves away from the hospital each day.
Carly and Ryan were offered a room at the Sick Children’s Trust’s Crawford House, close to the hospital, but with eight-year-old
little miracle rainbow baby,”
daughter Olivia Grace Walker unable to stay with them due to Covid restrictions, they had to make the “heart-wrenching” decision to go home at night, so they could be there for both girls.
“It’s been the worst experience of my life, the hardest thing I’ve ever had to do,” Carly said.
To add to their difficulties, the costs of travel back and forth from the hospital to their Northumberland home, as well as meals while they wait at the hospital, have begun to add up, mounting pressure on the new parents.
Determined to help the couple out, pal Annouska Adamson set up a Gofundme page to help with their costs, which has already been flooded with messages of support and donations of over £800.
Urging people to give what they can, she said: “Let’s show Carly & Ryan that Bedlington [is] behind them all!”
“I’ve had hundreds of messages on social media from people asking to help,” Carly said.
“I’m a bit stubborn and find it hard to ask for help, I would rather scrimp and save, but this is going to help massively.
“There are so many people who have been following her journey from the beginning, they’ve taken her to their hearts even though she’s not their child, and they are rooting for her.”
Despite the heartache every time they have to leave Ayda’s side, the parents have been helped by the “amazing” support of nurses at the Special Care Baby Unit, who’ve been sending updates and images to them through the night.
Carly said: “The nurses have been absolutely fantastic, they are rushed off their feet there and the work they do is unreal.”
People can support the family by going to the website at www. gofundme.com/f/ ayda-grace-murphy