Leanne Shirt, 35, and her partner Mike Pickersgill, also 35, of Kingstone, had a tough few months following the birth of their daughter Hope in January 2021.
At Leanne’s 20-week scan she was told that something was wrong with Hope’s heart and due to Covid-19 restrictions she had to be told alone - a day she admits she’ll never forget.
She had a double outlet right ventricle, VSD (ventricular septal defect) and severe pulmonary stenosis.
After being born in Leeds, Hope was transferred back to Barnsley after a week because her condition had stabilised - but things later took a turn for the worse as her oxygen levels started dropping and so she was transferred back to Leeds.
After having a number of what doctors called ‘mini heart attacks’, Hope had two life-saving open heart surgeries and, after more than a year without another, underwent her third on Monday.
Leanne told the Chronicle: “This was her third of those operations and as a family it has been a really traumatic time.
“She’s been having the odd dips in her oxygen levels but it’s been the last two weeks where it’s been really low.
“The past few years have been okay but definitely challenging - she has to be with me 24/7.
“We have to monitor her all the time and she’ll probably be having these operations and procedures until she’s five or six years old.
“When she gets to about seven then that’s when a full repair of her heart can be done.”
After undergoing the surgery on Monday, Hope was sat back up the following day - and the family are staying positive despite the news on whether she’ll need a pace maker fitted not yet being concrete.
“She’s been doing really well since the surgery,” Leanne added.
“Her heart is currently relying on the pace maker and not working itself so we’ve got to stay in intensive care here at Leeds General Infirmary until we find out more news.
“We’ve been here since Sunday but if her heart does start working we could be home by the weekend.
“If not then she’ll have a pace maker fitted at some point next week.
“But if that is the case then she’ll have a better quality of life which is what we all want.
“They last around seven years so it means she’ll be having a similar operation every seven years.”
Since her first operation at just weeks old, Leanne has said Hope has ‘blown them all away’ with her strength - and the community are continuing to follow her journey.
“She’s doing amazingly,” she said.
“Only 24 hours after her surgery on Monday she was sat up and eating some chocolate buttons.
“All the community has been following us since the first day and they’ve been really supportive - the charities involved are also helping us.
“She’s been such a fighter and she’s blown us all away.”
Leanne hopes the following weeks will prove fortunate for Hope - and it’ll hopefully give her a life other youngsters may take for granted.
“The main thing is giving her a better and more comfortable life,” she said.
“Just things like not having to be around us 24/7 and even going to nursery will be great.
“Those are the things others take for granted.”