Monday 26 September 2016

'My imperfections will be the ones noticed' - Teen posts heart breaking poem as wait for life-changing surgery continues

Published 21/05/2015 | 12:59

A 15-year-old girl who has been on the official waiting list for surgery for severe scoliosis has written a heart-breaking poem about the anguish she is going through.

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'There's talk of...' depicts a lonely world for the student who is embarrassed to go to school and scared to attend parties.

"When the others my age are beautifully made up, I will be at home with backaches as my company. I will be trying to convince myself that this is what makes me happiest.

"There’s talk of a party next weekend. There’s talk of absolutely everything but when I will feel comfortable in my own skin again.," she writes.

Read Sophie's poem in full here: 'There's talk of...'

Sophie O'Grady was diagnosed with an 80 degree curvature of her spine last February and was recommended for surgery because of the severity of the illness.

The waiting lists for children, mainly young girls, needing surgery for scoliosis, has been deemed "unsatisfactory" by Health Minister Leo Varadkar as delays of between 12- 18 months have become the norm.

According to her mother Linda Watts, Sophie has not seen either her surgeon or consultant since last summer, despite several attempts to make an appointment at University Hospital Galway (UHG).

"The emotional impact of having scoliosis is  every bit as distressing and damaging as the physical effects" the mother-of-five told independent.ie

"The change we have seen in Sophie in the past year has been dramatic. The confident, cheerful and bubbly teenager is now a withdrawn, introverted and despondent version of the girl she used to be.

"The old Sophie is still in there somewhere, weighed down by worries about having major surgery, about her education being jeopardised, about not being able to sleep properly, not being able to climb the stairs without feeling short of breath, and about how her clothes all look crooked on her. Waiting month after month for that phone call," she told independent.ie.

Read more: Desperate mother begs Health Minister for life-changing spinal surgery for daughter (13)

Sophie was part of a small group who attended a protest outside the Dail last week, organised by Scoliosis Ireland and the Facebook group 'Petition to Leo Varadkar to get our children life-changing scoliosis surgery'.

This simple day trip from Galway to Dublin left Sophie bed-ridden for several days from exhaustion and pain.

However, her mother Linda said she believes"the distress and psychological trauma caused prolonging surgery for these children is immeasurable" an" I have to condemn those in power for not addressing the situation much sooner," she said.

"Like a lot of parents, we were quite unaware of the problem with waiting lists until Sophie was diagnosed, indeed, scoliosis was only something we had ever heard of in passing, certainly we didn't know what exactly it was, or how much it could affect a persons life.

"Sophie can't participate in PE at school, she hasn't for almost a year now. A year of sitting on the sidelines when she should be having fun with her friends, picking teams for school activities, buying the swimsuit for swim class, all had to be avoided because of pain, shortness of breath, headaches. The days of giving piggy-back rides to her younger sisters are gone too, they used to ask her to play with them all the time, now they just say they can't ask Sophie to play because she has a "sore back".

Read more: ​​'Waiting for my daughter's life-changing surgery is pure torture' - Mother of teen girl with scoliosis reveals agonising 14 month wait

"Every mother thinks their children are the most wonderful in the world, and so they should. I have always told my daughters they are beautiful, and what happens when one of them starts not only to think they are no longer beautiful, but that they're so deformed that they can't bear to leave the house because they no longer feel "normal".

"For a lot of teenagers, being different in this way is psychologically traumatic at best. All of them deal with it in their own way, but in reality they all want the same thing, in Sophie's own words, to be "comfortable in my own skin"."

A spokesperson for Our Lady’s Children’s Hospital, Crumlin has said that there are currently 174 children on their spinal surgery list.

"There has been a commitment from the HSE in relation to additional funding for paediatric spinal surgery for 2015 and Our Lady’s Children’s Hospital Crumlin are in ongoing discussions with the Department of Health/HSE/ and Children’s hospital group in relation to the service," said the spokesperson.

Independent.ie have contacted University Hospital Galway in relation to waiting list length for scoliosis surgery but have yet to receive a response.

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