Exclusive: 'Doctors saved my life at four... then paralysed me at 13' - Emily Casey (21)
- Emily Casey (21) was four-years'-old when she was diagnosed with meningitis
- After making a remarkable recovery, she was then left paralysed after a 'medical mishap' during surgery
- The young woman says that 'every day, life is like a nightmare'
A young girl who survived life-threatening meningitis as a young girl has told how she was left paralysed after surgeons accidentally cut her spinal cord during a routine surgery.
Emily Casey, now 21, from Dalkey, Co Dublin, was left in a coma, aged four, after developing meningitis overnight in 2000.
Just nine years later after making a miracle recovery, she was left paralysed at the age of 13 due to a "medical mishap".
Mum Stephanie Casey invited Independent.ie into their home for an exclusive interview on how life has changed since the double tragedy.
"Emily was four when she got meningitis. She was fine on the Saturday and then she started to complain about a headache. I noticed she had a temperature but I gave her some panadol and that brought her temperature down. Emily went to bed as usual and before she went to bed she was running up and down the stairs. I had no reason to think that anything terrible was coming.
"At 8am on the Sunday morning I saw a big blue mark on her cheek. Then I pulled back her duvet and I saw blue and black marks all up her legs. She was dying.
"The last thing Emily said to me before she fell into a coma was that her hands smelled funny. There were black lesions on her hands and they did smell like death."
Stephanie said she rang for an ambulance and Emily was rushed to Our Lady's Children's Hospital in Crumlin where a team of doctors were waiting for her.
"It was like something out of the movies. She was dying in the ambulance and they got her into the intensive care.
"She was dying for five days. We called everyone in to say their goodbyes. On the fifth day, she began to stabilise and her organs stopped failing. But on the fifth day it attacked her brain and she had multiple bleeds to the brain. She almost lost her hands and legs, they were all black."
After the meningitis, Emily was left paralysed and in a coma for several weeks.
"She was 'locked-in'. Doctors didn't know if she was conscious or unconscious. We didn't know if she could see or hear us. We stayed in intensive care all the time with her reading and singing to her, hoping she could hear us."
Stephanie said that seven weeks after Emily got sick, she knew her daughter would be ok.
"I was shaking a toy in front of her and she smiled. I knew there was somebody in there. A couple of days later she began to move her finger. We had a smile and some movement. I remember crying for hours thinking that if this was it, I would take the smile and the little moving hand."
Two weeks later, Emily began to speak for the first time since her illness.
"I asked her what movie she wanted to watch and she whispered 'Mulan'. From then on she began to improve and she went to the National Rehabilitation Centre to relearn how to walk and talk again."
While Emily learned how to walk again with some help, she couldn't walk "normally" because the meningitis has tried to "amputate her legs".
"At six she ended up walking with a walking frame and she could talk."
Mum Stephanie, who has three other children, Sarah (36), Gilly (34) and Chris (18), said she spent every day hoping her youngest daughter would improve.
"My beautiful, very able, bright, energetic four-year-old was left with so many disabilities, but she is amazingly courageous."
After surviving the deadly meningitis, Emily was again struck with a devastating diagnosis in 2009.
"Because of Emily's meningitis she had a lot of procedures because she lost flesh after the disease. Her back developed a scoliosis curve and she went for a scoliosis surgery.
"Sadly on the day of the surgery, a screw was misplaced into the spinal cord. She now has no movement from her chest down. She was left paralysed.
"She has been to the High Court on that and a decision was made in her favour. She got a compensation package so she will be able to get ongoing care for that."
In the High Court in 2015, Emily was awarded €4.8million against the HSE, as well as an apology from the hospital.
"It shouldn't have happened. I don't think I processed the news when I heard it. I kept going and tried to help her in any way that I could. I was very angry and upset. I was devastated and shocked. But I didn't stop doing what I was doing, which was minding her. Even the nurses couldn't believe that it happened."
Emily was left in hospital for a year after the surgery mishap.
"We know that is a surgical accident where an item was placed into the spinal cord by accident in the surgery. Emily is very angry at the surgeon and the surgical team. She often says 'they gave me back my life when I was four and then took away my walking when I was 13'. Accidents happen and they shouldn't. But it did."
Speaking from her home, Emily (21) told Independent.ie that "everyday, life is like a bad dream".
"I can't wake up from this nightmare."
After everything she went through, Emily is now urging people to get the meningitis vaccination.
"My spinal cord injury is another reason why I want everyone to get the meningitis vaccine so they don't have to go through what I did and be operated on and have their spinal cord cut.
"I just want to be able to walk again. It's hard to remain positive when you've had two injuries. An injury to the back and to the brain."
After seeing what her child went through, Stephanie said that everyone should get the meningitis vaccine.
"She got meningitis type B, but there is type C and now there is new vaccine called the ACWY vaccine. Meningitis is around. You need to get vaccinated against all types of meningitis. Emily wants to get the new ACWY vaccine, in case she gets that. I can't understand why someone wouldn't vaccinate their child. It's an instant and deadly virus," Stephanie said.
Stephanie issued a warning to all parents and said if you have any concerns about your child having meningitis to go to the doctor straight away.
"If you think your kid might have meningitis, just go and get it checked. You're better going and having it checked out and not having it than missing it. It is a big fear for doctors that they will miss the signs of meningitis. You can't see it until a child is dying. If you do have any concerns, just go to the doctor.
"We didn't have any warning signals. We were just the unlucky family who had no warning signals of meningitis."
Emily now loves to work with her hands and enjoys building Lego and doing arts and crafts, as well as watching movies.
Despite the many physical and mental challenges, she remains remarkably upbeat and loves minding children.
"I am doing work experience minding kids. I'm working with little children and loving it. They're a little bit hard to handle at times but I like it," Emily said.
Mum Stephanie said that while Emily tries to remain busy, she is often overcome by sadness.
"She gets very sad sometimes. She loves people and is great with people. I need to be there for her and listen to her. She needs to know that she can confide in me and that I know how she feels. That helps and then we keep her busy."
She added that their family's life has completely changed.
"I now get up at 6am and I care for Emily all day. I love her so much and I'm just glad she's here. She was so close to not being here anymore."
The family adapted their home when Emily was eight-years'-old so she could get around the house with her walking frame. Now that Emily is paralysed and in a wheelchair, the family are considering moving to a more wheelchair accessible home.
Looking to the future, Emily says that her dream is to attend the Late Late Toy Show.
"We will try to make it happen this year," said Stephanie.