Susan Manganello

My daughter Jennifer became significantly disabled following a spinal fusion seven years ago. Because her case is still in litigation, I cannot discuss the details of the surgery. She was fifteen years old at the time and lived her last seven years increasingly disabled, a prisoner in her own body.

As a result of her surgery she became primarily wheelchair bound and had very little endurance. or strength.

Secondary to the nerve damage along the thoracic and lumbar region of her spine, she suffered from a neurogenic bladder, chronic and recurrent urinary inflections and reflux from high pressure into the kidneys. Complications intensified and she was diagnosed with end-stage kidney disease. She required regular kidney dialysis and she did not tolerate the dialysis.

Since her original surgery, she had many multiple hospital stays from urinary tract infections, fractured hips, dialysis complications and two hospital stays were for suicidal depressions. There was no escape.

Never to run again, work after school, never mind attending school on a regular basis. Who can put a value on that?

She could not work nor live independently. She felt she was a burden to our family and loved ones. Jennifer would see her siblings planning activities with friends and feel lonely and sad. She never had a choice for a normal life. She had to live every day fighting to stay alive.

Our healthcare system needs to be held accountable for the “care” it provides.
And I learned that as her caretaker, many times I was not treated as a vital part of her care. The system works against us. We must speak up and speak out.