A BRAVE young woman is calling for the earlier detection of scoliosis in cerebral palsy sufferers after being left bed-bound by the condition for a year and a half.
Holly Minihane, a wheelchair user from Mahon, was told she would spend a year recovering from a ten-hour operation to straighten her spine last June.
She explained that complications from her cerebral palsy made her scoliosis harder to detect, resulting in devastating consequences.
Scoliosis is a curvature of the spine, which can interfere with breathing by putting increased pressure on internal organs.
In the months leading up to Holly’s surgery, she was unable to leave her bedroom for anything except medical appointments.
She described her experience as the most frightening time of her life.
The 24-year-old is now keen to be an advocate for other young people who are having their lives put on hold by the condition.
“I became a prisoner in my own home and a prisoner in my own body,” she said.
Courageous Holly, whose nightmare began in January of 2017, said she had been reassured by a consultant that her Scoliosis was not progressive.
“However, in the months that followed her spine became gradually more deformed.
“I was told that because I had stopped growing the condition would stay the same but that didn’t happen.
“My organs were so compressed I was unable to breathe properly.
“I couldn’t go anywhere. If I did, I came home crying as the pain was too much.
“My independence was taken away from me.
“I ended up being confined to my bedroom for a year and a half. In a way, the mental effect was worse than the physical effect of the condition.
“Scoliosis became more of a disability for me than cerebral palsy. I can remember bursting into floods of tears in front of one consultant who I was seeing for something completely unrelated. By the end of it, she was crying too. The situation seemed so hopeless.”
She praised her mum Martina for keeping her strong throughout the ordeal.
“I wish I hadn’t taken my anger out on her,” Holly confessed.
“Unfortunately, mum was the only one around at the time so it was her who got the brunt of my frustration.
“She must have heard me crying into my pillow the night before my operation because she came in and offered me a hug.”
Mum Martina said she had done everything to make life between the four walls bearable.
“I tried to do new things with the place all the time,” Martina said.
“Moving the bed, painting the walls. There was always something being done to keep things varied.
“It took a lot of persuading just to get Holly to let me open the curtains. She often told me there was no point as it was raining outside. I had to remind her that it was better than looking at a blank wall all day.”
Holly described the socially isolating nature of her condition.
“I didn’t wantanyone to see me the way I was,” she confessed.
“My body was completely deformed. The only time the physical and emotional pain went was when I slept so I tried to sleep as much as possible.
“Nobody deserves to live like this. I don’t take a breath for granted now.”
She recalled how her mum was forced to call an ambulance on two occasions after her ribs were protruding so severely.
“It was a very scary time,” she added.
After much research, Martina found a surgeon willing to operate.
“Jacques Noel was one of few medical professionals who spoke to me and not my mum,” Holly said of the Tallaght University Hospital-based Trauma and Orthopaedic surgeon.
“He was one of the nicest people I’ve ever met. When you have a disability there are a lot of people out there who assume you don’t have your own mind. He communicated with me in a very down-to-earth way and told me not to worry about anything.
“When I woke up from surgery I was on a ventilator in the Intensive Care Unit. The operation was supposed to last six hours but it lasted 10. That should in itself tell you how bad the situation was. The wound from the operation was 13 inches deep.”
The social studies graduate fears there may be other people needlessly suffering.
“It’s not right that people should be left behind like this. I got really lucky because I have my voice. Only a small portion of people with cerebral palsy have speech. My hope is to use my voice for people in my situation who aren’t able to speak up.”
She concluded with a message of strength for those in similar situations.
“Don’t be so hard on yourself. This isn’t your fault.
“For the longest time, I felt like this was all my fault but that couldn’t have been further from the truth. You have every right to feel sad. Stay down as long as you need to as long as you know that you will get back up again.”