A heartbroken family has paid tribute to their “spectacular” daughter who died just a day before starting school.
Four-year-old Rose O’Leary-Hall struggled with heart disease and had to undergo multiple surgeries.
But the little girl did not survive the final test and tragically died on September 4th, just one day before starting school.
Katie O’Leary-Hall and her wife Sue, from Pool-in-Wharfedale, Leeds, learned at her 20-week scan that Rose had an interrupted aortic arch – a condition which affects only one in 50,000 people.
The condition occurs when the aorta – the heart’s main pathway that carries oxygen-rich blood to the body – does not fully form.
Normally it is in the shape of an arch or curve, but in an interrupted aortic arch, part of the aorta is missing, creating a gap, they say Children’s health.
Because blood doesn’t flow into the gap until it’s repaired, the lack of blood flow and oxygen can damage the liver, kidneys and intestines, it said.
Symptoms include weakness and fatigue, rapid breathing, rapid heartbeat, and poor nutrition.
Katie said little Rose had surgery when she was born to repair the defect, but surgeons were unable to patch the aortic arch because she was “very small”.
She said Rose instead underwent the Norwood procedure, which involved building a new, larger aorta, when she was just three days old and remained in hospital for five weeks afterwards.
“She was doing really well,” Katie remembers.
When she was 10 months old, the little one had another open-heart surgery, but doctors still couldn’t repair her aortic arch.
Katie and Sue – who also have an eight-year-old son, Will – said they knew Rose needed a third and final operation, called a biventricular repair.
But they told how Rose “really started to struggle” and that she even found it difficult to go to her childminder, Amy, around the corner.
Her mothers counted down the months until Rose’s third surgery, scheduled for August 15, in the hope that it would improve the oxygen levels in her blood.
Rose underwent the procedure at Leeds General Infirmary and had a pacemaker fitted on August 24.
Katie said: “Everything just went well after that.”
“She was extubated and started moving around – she didn’t talk much but said ‘Hello mom’.”
“But then everything went horribly, horribly wrong.”
‘WORST DAY OF MY LIFE’
Apparently Rose had contracted endocarditis – a rare infection of the inner lining of the heart – and began bleeding, losing about half of her blood volume.
Katie said: “We got the call saying ‘Come on, she needs surgery’.”
“They couldn’t understand where the blood came from.”
Rose was stabilized, but two nights later the family received another call telling them that Rose had “crashed.”
Katie described it as “the worst day of my life.”
She said: “What she thinks happened is that this infection got into her heart and the tissue started to crumble and the plaster that they had put in the operation crumbled.”
“They had to open their hearts right away because the chest compressions weren’t working.
“People ran to the blood bank and got blood. Her brain didn’t have enough oxygen. They had to turn off the equipment.”
Paying tribute to the young woman, she added: “I always called her my little firecracker. She did everything at 100 miles per hour.”
“She was really, really mischievous, but also very loving.
“She did everything 100 percent — she cared 100 percent, she loved 100 percent.”
“She was just amazing, everyone adored her.”
Everyone in her village knew Rose, Katie said.
She added: “She wasn’t shy and always chatted in a small group.”
Sue told YorkshireLive that Rose’s favorite song was “This Time For Africa” by Shakira and on the way to her surgery she danced and had her mothers, the nurses and the anesthetist dance with her.
Sue said she wanted to be a doctor and took out her little medical kit to take care of her dolls before surgery.
Rose was an absolute blast and so spectacular.
She said: “She was so full of mischief, love, kindness and fun. She was all on stilts.”
“I can’t believe we’re organizing the farewell.
“Rose was an absolute blast and so spectacular.”
“She left a mark on everyone she met and people felt a connection to her.”
Katie and Sue shared heartwarming videos showing Rose playing with her toy dog and walking by the sea.
And her childminder, Amy, set one up GoFundMe Page to cover the costs of little Rose’s funeral.
The fundraiser has already reached over £5,000 – Kate and Sue say they are overwhelmed and humbled by this.
Of the donations, Sue said: “We are just speechless by everything.”
“We went through the most horrific trauma imaginable, and I feel like we were just in a dreamlike state, fighting and fighting to save her and not being able to.”
“After we lost her, we continued to live from minute to minute.
“We wouldn’t have asked anyone for money, but we are just completely overwhelmed by the kindness and deeply humbled by it and the impact it has made on everyone’s lives.”
Katie added: “We just want to say thank you, we really weren’t expecting this.”
“We would love to have her back in a heartbeat, but it will make things easier for us.”
The couple would also like to draw attention to the fact that the disability maintenance allowance to which they were entitled ends on the day the person entitled to it dies.
“There is no room for mourning,” they said.
Families often use the money to buy cars to transport people who need it, and it also helps cover other expenses.
Katie said: “We’re in a good location, but some families are using their cars just because of that, or just have a spare room because of that.”
“People can be homeless or carefree in an instant. This is such a kick in the teeth.”