The unexpected passing of four-year-old Rose O’Leary-Hall has left a profound void in the lives of her family and those who had the privilege of knowing her. Rose’s untimely departure on September 4, just a day before her anticipated first day of school, marked the culmination of her brave battle against a lifelong heart condition that necessitated multiple surgeries.
Katie O’Leary-Hall and Sue O’Leary-Hall, Rose’s parents from Pool-in-Wharfedale, Leeds, received the heart-wrenching news about their daughter’s condition during a 20-week prenatal scan. The scan revealed an interrupted aortic arch, a rare condition where the aorta fails to develop properly. Rose’s indomitable spirit saw her through numerous successful procedures over her short life, but, tragically, she succumbed to her condition, leaving her family in mourning.
From the moment of her birth, Rose’s life was marked by surgeries. Her first attempt to repair her aortic arch was thwarted by her tiny size, leading to her undergoing the Norwood Procedure just three days after birth, which involved constructing a larger aorta. This initial operation demanded a five-week hospital stay.
“Remembering the Remarkable Life of Rose O’Leary-Hall: A Heartbreaking Loss”
Katie, reflecting on those challenging times, said, “She was doing really well. 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 ten months old, Rose faced another surgery, but the elusive repair remained out of reach. After showing initial promise, she suffered a stroke shortly thereafter. Her parents, Katie and Sue, who also have an eight-year-old son named Will, knew that Rose would still require a biventricular repair, which they hoped would be her final surgery.
Rose’s journey included regular ECGs to prepare her for the next operation, and for a while, it seemed that things were progressing in the right direction. However, this year brought a decline in Rose’s health, and even short walks became a challenge. Katie explained, “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.”
“Remembering the Remarkable Life of Rose O’Leary-Hall: A Heartbreaking Loss”
Finally, on August 15, Rose underwent the surgery at Leeds General Infirmary, followed by the fitting of a pacemaker nine days later. There was initial hope when Rose was extubated and showed signs of movement and recognition, even saying “Hi mummy.” However, optimism quickly turned to despair as Rose contracted endocarditis, a rare heart infection that caused severe bleeding.
Katie recalled those harrowing moments: “After that, everything was just going well. She was extubated and started moving – not talking very much but she said ‘Hi mummy.’ [But then] it all just went horribly, horribly wrong.”
In a heart-wrenching turn of events, Rose’s heart surgery patch deteriorated due to the devastating effects of the infection. Desperate measures were taken, including immediate heart surgery when chest compressions failed. Rose’s life hung in the balance as she lost roughly half of her blood volume before stabilizing. Tragically, another bleed and clot occurred the following night, and two days later, the heartbreaking call came—Rose had “crashed.”
Katie, her voice filled with sorrow, recalled the anguish: “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. People were running to the blood bank and getting blood. Her brain didn’t have enough oxygen. They had to turn the machines off.”
In remembering Rose, Katie shared, “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 percent – she cared, she loved at 100 percent. She was just unbelievable, everyone worshipped her.”
Rose’s vivacity, mischief, love, kindness, and boundless fun endeared her to all who crossed her path. She left an indelible mark on their lives, forging deep connections with those she met.
Amy, Rose’s childminder, has initiated a GoFundMe page to provide support to Rose’s grieving family as they navigate the daunting expenses associated with her funeral. The response has been overwhelming, with kind-hearted donors contributing £7,500 to date.
Sue expressed their astonishment and gratitude, saying, “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.”
Katie added, “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.”
As they cope with the loss of their beloved Rose, the O’Leary-Hall family remains profoundly moved by the outpouring of support from a compassionate community during this unimaginably challenging time.
To contribute to the GoFundMe page, please click here.