'Spectacular' girl, 4, died hours before first day at school after heart surgery
A four-year-old girl died after heart surgery, just hours before her first day of school as her family have paid touching tribute.
Rose O'Leary was described as a vibrant little "firecracker". The four-year-old had bravely battled against a rare heart condition and even underwent a number of heart surgeries to try and rectify the defect.
Her parents, Katie O'Leary-Hall and Sue O'Leary-Hall, from Pool-in-Wharfedale, Leeds, were informed during their 20-week scan that Rose was afflicted with an interrupted aortic arch, a condition that affects a mere one in 50,000 people. This condition arises when the aorta - the heart's primary artery - fails to form completely. Despite enduring several successful surgeries throughout her short life, Rose tragically succumbed to her condition earlier this week.
Little 'firecracker' Rose O'Leary-Hall had been just hours from her first day of school (Yorkshire Live/ Katie O'Leary-Hall)She died just hours before she would've enjoyed her much-anticipated first day of school - and had tragically even already been pictured in her school uniform, YorkshireLive reported.
Katie shared her story. She said that when she was just born, the first attempts were made to repair the defect, but due to Rose's "very small" size, patching the aorta wasn't feasible. Instead, Rose underwent the Norwood Procedure at just three days old - where doctors try to build a new aorta - resulting in a five-week hospital stay.
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"She was doing really well," Katie said. "We were hoping they would be able to do the operation and they would be able to turn her heart back to red blood and blue blood. We knew from her being six-months-old she would need another open heart surgery."
At 10 months, Rose underwent further surgery. Unfortunately, a complete repair wasn't possible. Despite this setback, Rose initially seemed to recover well, but then had a stroke. Katie and Sue, who also have an eight-year-old son named Will, were aware that Rose required a third and final surgery - a biventricular repair. Katie said: "It was only every six months she would have an ECG and everyone would say she was doing really well, it was looking really good. We had an MRI and cath lab and were really hopeful she could have the surgery."
Rose, her parents Katie and Sue and brother Will (Yorkshire Live/ Katie O'Leary-Hall)However, the family noticed Rose "started to really struggle", even finding it difficult to walk to her childminder Amy's house around the corner. Katie said: "The last four or five months we were just waiting for it, it was going to be much better for her in terms of oxygenation."
Rose underwent the surgery at Leeds General Infirmary on August 15 this year, followed by a pacemaker fitting on August 24. Katie said: "After that, everything was just going well. She was extubated and started moving - not talking very much but she said 'Hi mummy.' It all just went horribly, horribly wrong."
Katie said that Rose, in retrospect, seemed to have contracted endocarditis - a rare and dangerous infection of the heart's inner lining. This led to severe bleeding, causing Rose to lose approximately half her blood volume. Katie said: "We got the call saying 'Come now, she has gone into surgery.' She went into surgery between 3am and 5am. They couldn't understand where the blood had come from."
Rose was stabilised after the operation, but the family received another distressing call the following night. Rose had suffered another bleed which then "sort of stopped." Katie said: "They had to go back in again because there was a clot. They were worried it could cause an infection. On Wednesday we were quite relieved to not have a middle-of-the-night phone call. I went in on the Thursday and it was the worst day of my life."
Rose underwent several heart surgeries in her short life (Yorkshire Live/ Katie O'Leary-Hall)The situation took a turn for the worse when Katie received a phone call informing her that Rose had "crashed." She said: "I hoped it would be like the previous two but it was catastrophic. What they think happened is that this infection got into her heart and the tissues began to crumble and the patch they had done in the surgery was crumbling. They had to open her heart there and then because the chest compressions weren't working."
In a desperate attempt to save Rose, medical staff were seen rushing to the blood bank. However, her brain didn't receive enough oxygen and they had to turn her life support machines off.
In a heartrending tribute, Katie fondly remembered her "little firecracker", saying: "I used to call her my little firecracker. She did everything at 100mph. She was really, really mischievous but also really loving. She did everything at 100 per cent - she cared, she loved at 100 per cent. She was just unbelievable, everyone worshipped her."
Rose, a beloved figure in her village, was known for her outgoing personality. Katie added: "She wasn't shy, always chatting in any little group."
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Sue shared with YorkshireLive that Rose's favourite song was Shakira's "This Time For Africa". On the way to her surgery, Rose danced and got everyone around her, including her mums, nurses, and anesthetist, dancing along. Sue revealed that Rose aspired to be a doctor and would often play with her little medical kit, caring for her dolls.
Sue described Rose as a vibrant spirit, saying: "She was so full of mischief and love and kindness and fun. She was everything on stilts. I can't believe we are organising how to say goodbye. Rose was an absolute firecracker and so spectacular. She left a mark on everyone she met and people felt a connection to her."
Katie and Sue have shared touching videos of Rose playing with her toy dog and taking walks by the seaside, capturing her joyful spirit.
A fundraiser set up in Rose's memory has already surpassed £5,000, leaving Kate and Sue feeling both overwhelmed and humbled. The couple hopes to raise awareness about the abrupt cessation of disability living allowance - a benefit they were entitled to - upon the death of the recipient.
In a heart-wrenching turn of events, families are often forced to use their Disability Living Allowance (DLA) to purchase cars for transportation and cover other expenses. Sue reveals that she and her partner are now battling to save their home as they face a loss of over £400 a month from the DLA, while their mortgage increases by £215. The situation is further exacerbated as Katie has reduced her working hours to part-time to care for Rose, leaving the family over £1,100 a month worse off.
Katie shared her concerns, saying: "Some families use their cars that they only have because of it, or only have a spare room because of it. People can be left homeless or carless straight away. It's such a kick to the teeth."
She also revealed that she had cut down her teaching days to four a week to spend more time with Rose. She added: "Sue was in charge of the DLA and it stopped the day she died. There's no grieving space."
Speaking about the donations they've received, Sue expressed her gratitude: "We are just gobsmacked by it all really. We have been through the most horrific trauma you could imagine and I feel we have just been in a dream-like sort of state really, fighting and fighting to save her and not being able to and you are just sort of living minute by minute."
"After we lost her, we have been living minute by minute. We wouldn't have asked anyone for money but we are just completely overwhelmed by the kindness and just highly humbled by it and the mark she made on everyone's life. We are so humbled, with the position the country is in financially and how people are struggling, we can't believe people have donated."
In an emotional statement, Katie expressed her gratitude, saying: "We just want to say thank you, we were really not expecting this. We would give it back in a heartbeat to have her back but it will make things easier for us."
Click here to visit their fundraising page.
* This article was crafted with the help of an AI tool, which speeds up The Mirror's editorial research. An editor reviewed this content before it was published. You can report any errors to [email protected]
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