Bobbi - posted on 03/03/2011 ( 22 moms have responded )
My daughter Jade is 12 and has CP, VP shunt,Gtube,chronic lung disease,spasticity,epilepsy,acid reflux,and has suffered from a severe stroke so she does not walk or talk. She has scoliosis that has 2 curves in her back and the lumbar is at 75% which is causing her organs to displace up into her left lung. The surgeons now want to do surgery but the interns told me she would have a 30% chance to survive post op problems and the main surgeon says she can recover in 1-3 yrs. He also stated this will not save her life but prolong it.
After talking to surgeon I took her a lung specialist and he said if I don't do the surgery she will die of lung failure.
Here is my dilima, I want a quality of life for my daughter NOT quantity so if she is going to suffer by spliting her open from neck to tailbone,disecting all the muscles and nerves from her spine, putting rods ,cadaver bones,pins and screws in her back I dnt feel like that is worth prolonging her life to only be able to lay on her back in, what I think would be tremedously ecrushiating,pain. She is a sound mind trapped in a broken body and would not be able to tell me where it hurts and how bad the pain would be on a scale from 0-10.
I feel I have come to a cross road where I have to say enough is enough and not have the surgery and just say goodbye. I am torn spiritualy, and don't think its fair that I have to basicly choose which way I want my little angel to die.
If there is anyone out there who has/had a child that is/was simular to age and medical problems to my daughter that has or has NOT had this spine surgery and what you went threw.
I want to choose what will be the least suffering for my daughter. Thank you so much and God bless
Bobbi n Jade