Mum posts raw clip of her daughter (21) sobbing in pain after three year wait for vital scoliosis procedure
A mother of a young woman who lives with advanced scoliosis, which has left her in constant pain, has pleaded with the Health Minister to secure a date for her surgery after three agonising years on the waiting list.
Naas mum Tina O'Kelly shared a heartbreaking video of her daughter this week, in which Colleen (21) was left sobbing with pain caused by her condition. Colleen's scoliosis has reached a critical level and her spine in now pressing against her lungs, compromising her respiratory system.
"Colleen's had scoliosis since she was very young, she was about four or five when it was first diagnosed and we've been keeping an eye on it ever since.
"Colleen has a lot of other health complications, she lives with Joubert Syndrome, so it wasn't the priority for a long time. We had other priorities facing us, including a kidney transplant.
"When Colleen turned 18, we believed she was being transferred to the adult hospital in Tallaght from Crumlin, but she was being referred. There is no continuation there, so by the time she was seen in Tallaght it was two years later and her spine was at a 97 degree curve.
"We were told she was top of the priorities list, as the condition is so advanced, but now three years have gone by and we still don't have a date for surgery," said Tina, speaking to Independent.ie.
Colleen's spine is now curved at a 97 degree angle and is putting pressure on her respiratory system, which has made her more susceptible to chest infection and the 21-year-old is in danger of her lung collapsing. The coughing often makes Colleen vomit, which poses a serious health threat as she is a kidney transplant recipient and takes daily anti-rejection drugs.
Colleen is normally the life and soul of the party, but her mum said the pain caused by her scoliosis has left her in excruciating pain in recent months and the change in her has been very upsetting to watch.
"In September, Colleen's doctor showed me her X-ray and, even though I have no medical training, I was shocked when I saw it. I could see on the screen that her spine was pressing against her lung.
"She wasn't in huge pain in September but in November I definitely saw a change in her. Because her lungs are being put under pressure by her spine, she is more prone to chest infections and sometimes she coughs so hard until the point where she vomits. If her lung were to collapse now, they probably would not be able to re-inflate it because her spine is up against it.
"Colleen is such a mischievous little thing, full of laughter and fun, but these past few months the pain has changed her. Her life is getting up and going to her day service and she just loves music but she has been refusing to go, and some days won't even listen to her iPod," said Tina.
Tina has written letters to the Minister for Health and her local TDs in an effort to secure a date for Colleen's surgery and posted a video of her daughter in an effort to raise awareness of the difficulties facing patients who she feels have been "failed" by the system.
"I was anxious about putting up the video, but I feel like we are being forced to bare our souls to get things pushed forward. Colleen's situation was totally avoidable, it could have been tackled at a much earlier stage but now it is going to be really serious surgery. She does not need to be in this pain," said Tina.
Tina said the flaws in the system are often blamed on doctors, but the mum said Ireland's health service is forcing our doctors to make decisions they should not have to.
"It's not the doctors faults either. Colleen's doctor is a wonderful man, a gentleman. The system is forcing our doctors to play gods. How can doctors look at four charts, each worthy and in need of surgery, and choose? The system is forcing them to play eenie-meanie-minie-mo.
"The government says the problems are due to the HSE's mismanagement, not that there isn't adequate funding, while the HSE claims they haven't funds to fix the serious flaws in the system. They each play the blame game.
"I've written to all the TDs and the Minister and I have gotten responses, but we still don't have a date for surgery.
"On March 30 we have an appointment so I'll finally be able to see someone face-to-face," she said.
Watching Colleen in pain is putting a strain on her mum but also her dad Bob and her sister Amy (24) and Tina said the stress is made worse by the fact that her suffering it is "needless".
"Our system is very good once you get into it, but it's the waiting that's horrendous and hugely flawed. It's people like Colleen that are suffering.
"Watching my child in pain is horrific and the worst part of it all is that it is needless. She's been suffering like this for so long. I'm at the stage where I wake up and there's a knot in my stomach because of what she is going through and the pain she is battling through and something needs to change."
In statement, a HSE spokesperson said the body does not comment on individual cases.
Meanwhile, brave Megan Halvey-Ryan (13), who also suffers from scoliosis secured a date for her badly needed surgery after featuring on 'RTÉ Investigates Living on the List'.
The youngster shared the news on 'The Late Late Show' on Friday, alongside her mother Sharon. It comes after waiting two years for the operation.
Due to the pain of her condition - an abnormal curvature of the spine - Megan was unable to attend school. After sharing the news, her mother Sharon said she may be considered cynical but she had questions over why the family received the news hours before they were due to appear on the chat show when, she said, her daughter wasn't on any list to her knowledge.
However, the family are overjoyed that she will finally get the health-care she needs.
Megan, from Limerick, also spoke about a state-of-the-art operating theatre that has been lying semi-idle in Crumlin Children's Hospital.
A €5m orthopaedic theatre has not been able to function properly for nearly a year due to a lack of staff. Doctors have been carrying out only around two spinal operations a week, despite the demand.
"It makes me really angry because Simon Harris said he is going to get staff in April. If you had staff, why not just open it now? Why do you have to wait until April? Where are these staff going to come out of?" she said.
The brave teenager's story stoked anger around the country when 'RTÉ Investigates' featured her on a show looking at hospital waiting lists and the extent of her pain and discomfort was clear.