It had been several sleepless nights when Lauren Irvine decided to take her daughter Sophia to the hospital. The tot could only sleep upright as she was struggling to breathe.
Within minutes of arriving at the Royal Manchester Children's Hospital, doctors told Lauren, 28, and Sophia's dad, Dale, that she needed to have an emergency tracheostomy.
Little Sophia, then aged four, was placed on a ventilator so that surgeons could insert a windpipe to help her breathe. Nurses later told her terrified parents that by the time they got her on the operating table, she had already began to turn blue.
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They estimated she would have had just 24 hours to live if Lauren hadn't brought her daughter to hospital. The mum-of-three's decision most likely saved her daughter's life.
Sophia, now eight, who lives with her parents and siblings Sienna, four, and Arlo, 18 months, in Reddish, had first been diagnosed with laryngeal papilloma when she was three-years-old. The condition is caused by a benign lesion leading to an overgrowth in or different segments of the respiratory tract.
Lauren recalls that growing up, her daughter didn't really have a voice and just used to whisper. They kept taking her to their GP, who told them it was most likely asthma.
Speaking to the M.E.N, Lauren said: "My gut feeling was that it wasn’t that and something wasn’t right but they kept saying the same thing. I wanted a second opinion so we took her to Manchester Children’s Hospital.
"This was about six months later. The consultant said he knew what it was straight away. He said she had growths in the back of her throat which was blocking her airway and making it harder for her to breathe.
"We met the surgeon and she began having surgery to get them removed. She had to be put to sleep so they could scrape them out. That went on every couple of months."
But around a year later, Lauren and Dale noticed that Sophia was struggling to breathe when she slept, and had to remain in an upright position. She frequently wet herself, which her mum said was unusual as she had been fully potty trained.
"I took her to hospital and told our surgeon what was going on and he said straight away she needed to have a tracheostomy.
"It took five minutes for Mr Bateman [the surgeon] to diagnose her. He said she wouldn’t have survived 24 hours if she didn’t get a tracheotomy. It was awful, the worst time in my life. I can’t thank the hospital enough for what they did for Sophia."
Neil Bateman, a paediatric ENT consultant at Royal Manchester Children's Hospital, said Sophia's case of laryngeal papilloma was the 'worst he'd ever seen.'
"Sophia has been the most amazingly brave girl imaginable through her repeated surgeries," he said. "Her condition is something that I have seen many many children with but her’s was undoubtedly the worst case that I have ever seen. It has been a privilege to look after her from the beginning."
Sophia had to be hooked up to a ventilator for 24 hours and had to stay in the children's hospital for a month for observations following the tracheostomy.
"It was horrible to watch but I couldn’t thank the nurses enough," Lauren said. "They have become like good friends and a part of the family and they always check in to see how Sophia is doing.
"It was really tough at first. When I saw her in the recovery room I felt so sick. I was so scared. It was all completely new to me. We were told we'd have to clean and change the tracheostomy.
"Looking back now we just adapted to it. They offered us speech therapy and she had a few sessions at school but she has just adapted to the tracheostomy really well.
"We are all able to understand what she is saying and she can actually speak. It’s still quiet but we can fully hear her. She loves to sing all the time and you can clearly hear here as she will sing as loudly as she possibly can."
Lauren says it's been an absolute joy to hear her daughter perform her favourite pop songs, and sing along to her favourite musicals including Mamma Mia and Grease.
As part of the care provided, Lauren was given in-depth training at the hospital on how to look after Sophia with her tracheostomy tube. She takes Sophia to the Children's Walk In-Walk Out theatre at the Royal Manchester Children’s Hospital every month.
The service was set up as an innovative scheme in reaction to the COVID-19 pandemic in 2020 to help with wait times and means that children who previously would have to stay overnight in hospital are able to drop in for the day.
Sophia is great friends with the team there, especially Dr Catherine Doherty, Consultant Paediatric Anaesthetist, and Joanne Leigh, Assistant Practitioner - Walk-In Walk-Out lead.
Lauren said: "If it wasn’t for them, Sophia would really struggle in hospital. When she was little, she used to get quite scared but now she looks forward to going so she can see Jo and Cath. Because we know they will be there, it’s like going to a friend’s house.
"We have to change the tracheostomy tube once a week but we've adapted. Sophia won't have it for the rest of her life but because the pathaloma can be aggressive we don't know how long she'll need it.
"She lives life to the fullest. If you didn’t see it you wouldn’t know she had it. I would just say to other parents that your gut instinct is always right and always keep pushing."
Dr Catherine Doherty said: "Sophia’s worked really hard to get her voice back, and we’re all delighted that she’s doing so well and can sing her favourite songs!
"The Walk-In, Walk-Out project has transformed the hospital experience for many families. For Sophia, who attends every two to three weeks it has minimised her anxiety, reduced her length of stay and cut the impact on her day-to-day life."
The Walk-In, Walk-Out project has just scooped a national excellence award as part of an entry by the Children’s Hospitals Alliance, which includes the Royal Manchester Children’s Hospital. The National Paediatric Accelerator: Recovery Programme entry won the Health Service Journal Performance Recovery Award 2022.
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