A never-ending fight

     It is almost five years since that fateful night, April 8, 2009, when the blithe attitude of a second-year surgical resident reduced our daughter’s life to a wheelchair, leaving her with the inability to speak and a body that must be controlled through drugs and physiotherapy.

      A complaint to the Ontario College of Physicians and Surgeons against the young resident - who had not consulted the senior resident, let alone the surgeon in charge, about Mary and her post op fall - found in October, 2013, he did not do enough that night to find her better care, either in an ICU or a room with a PSW (Personal Support Worker) in attendance. Either location would have ensured that someone would have seen her vomit after that fall in her room after getting out bed. The care provided in ICU, or in a room where four patients are monitored by a PSW, would have been more immediate than being alone in a semi-private room.

      After five years of legal wrangling and the ongoing stress associated with attempting to sue a hospital (it just isn’t as easy and straightforward as one might think), we have at least had our suspicions about Mary’s care verified by the College. She should have had better care; as a pregnant woman, she certainly deserved it. We have berated ourselves to hell and back since that night, blaming ourselves for not sitting up with her through one more night, for not watching, for not monitoring, for not making sure medical staff were doing their jobs. It had taken us five days of trying to convince another Toronto hospital she needed her shunt replaced.

    You just assume they will do the right thing, don’t you? That they will take care of your loved ones and make sure they receive adequate monitoring and watching.
     Don’t ever count on that.

     And proving a lawsuit is difficult: when we met with our lawyers, it came down to us asking, “Well, why didn’t this resident consult with his senior resident, or better still, the consulting surgeon? It seems clear to us Mary wasn’t watched carefully after she fell in her room. Why doesn’t that count?”

    The answer: A convoluted response that still has me wondering what it’s all about. The lawyer explained the expert had to ask himself whether or not it would have mattered, time-wise, if the resident had consulted the senior resident or other surgeons, who were on their way to a trauma case in ER. Would it have made a difference? Would she have vomited anyway? And why was she vomiting? They don’t know, so … there isn’t a case. 
    What?

     Perhaps she vomited because she was 24 weeks pregnant? She had just had brain surgery to replace a failed VP shunt? She had fallen on the floor some eight hours after surgery?

     Not taken into consideration.

     Common sense doesn’t count. It was completely absent that night. And what about her nurse? Who knows. She didn't make any notes. 
     Interesting, that.

     What we learned, in fact, from one expert’s perusal of the file, was that this resident suspected, from very early on that evening, that the shunt was not working properly following its replacement. Because Mary was presenting as coherent and able to answer questions, they did nothing. They’d wait and watch. At least that’s what the lawyer passed on to us.
     Who knows? We didn't find that in the files.

      So that is how difficult it is to sue a hospital or doctor. It’s tough. Add to the fact that if you don’t have many, many thousands of dollars to place on a lawyer’s desk to help the fight, you’re sunk. Unless it’s easy and clear-cut, you can forget it. 
     You go into hospital thinking you’ll be fixed, healed, you come out years later unable to function, feed yourself, walk or talk.

     One lawyer – there were three of them, actually – looked at us levelly and told us emphatically: “They (the hospital) will fight you. They will take you to court.” We would lose, one of them predicted. “Don’t even think of it.”

      Doctors, the lawyers told us, through their medical malpractice insurance, have millions and millions at their disposal to fight cases such as Mary’s – and for years and years. 

     “And this will go on for seven years, at least,” one warned us.     

     “But someone,” one of the team said angrily, “should do a story on doctors and their huge war chests – partly funded by taxpayers. Really.”

     We were speechless.

 

       Mary’s flight from the hospital, (three and a half years after her injury), when we finally got things set up, was quick, the goodbyes embarrassing and the exit one of the most exhilarating experiences. Never again would we have to use dirty hospital washrooms, beg to try and find out exactly what was wrong with Mary, let alone what happened to her (and that’s still a somewhat murky area as there is no clear explanation written in her records). We would never have to trudge through a dreary and cluttered neuro unit with its smells, its sounds, its sadness. So much sadness.

      I swore I would never write another word about Mary’s story or revisit the past few years and the tragedy.  We wanted healing, peace, and time to be the engaged advocates any disabled person needs; for government, for pensions, for care, therapies and to help navigate the tricky medical system, which, by the way, is one rocky road when you have a brain injury.

      But Mary’s story is one that doesn’t go away. And it is one that could happen to anyone, given the nature and flaws of major hospitals; it is a story that needs telling. And that story goes so much further than the doors of a hospital.

     If we can prevent even one family from going down that precipitous road we’ve travelled, then we’ve accomplished something. If we can alert a patient to the fact they need an advocate even before they get to the doors of a hospital, then that is a good thing. Because things don’t always work out the way they are supposed to.

      Most patients are treated, go home or to rehab and get better, maybe - eventually.  There is the overriding fear of being in a hospital, the uncertainty of surgery, treatment or the disease itself. One way or another, the illness is resolved. But that never happens with a brain injury.

     And there are several things you have to know about brain injuries, about being a disabled person. It is very, very expensive. Equipment to help them stand, to use the washroom, the wheelchairs, walkers and therapies comes with a high price tag. Government funding offers some relief, as does fund-raising, but if you want to buy a specific piece of equipment, you know there will be sticker shock when you pay the bill.  A large supportive walker, which is vital to getting Mary on her feet, cost $1,400 used. It was originally priced closer to $5,000 new. If it’s not bad enough to be disabled, it’s a crime those people reduced to pensions and penury must be forced to pay outrageous prices for the very things that would help them live a better life.

     There’s nothing good about sustaining a brain injury; it is a life sentence. There is no fondly remembering the day the doctor told you everything was fine, there is no elation at going home, no well-being and no relief from the symptoms. Brain injuries are, by their very nature, vague and indefinable, finicky and unpredictable. Brains can, research has shown, rewire and function again to some degree following an injury. But brains are also like jelly; they hurt easily. And they contain our very world; our fears and beliefs, our moods and intellect. They govern our speech, our movements, our decisions and drive. They are our life force and can go seriously awry when damaged.

      A traumatic brain injury is one that occurs when a person sustains a blow to the head. There has been a lot of talk about hockey players and the long-term effects of the constant beating their heads sustain during the game. Helmets do a lot to protect the noggin, but the brain still moves about inside our skulls when we take a fall and hit our heads, or are struck by a hard object.

     Anoxic brain injury seems to baffle many in the medical world, as we’ve discovered, to our sorrow. If you cast about for a physiatrist (a specialist who treats brain injuries), you will be hard-pressed to find one who knows a great deal about anoxic brain injury. We have been lucky and feel blessed to have found one doctor in Toronto who has done research in this field.

     It’s harder to predict an outcome for someone who has suffered such an injury, we have been told. It occurs when the brain is deprived of oxygen for several minutes or more. It might happen to someone in an accident, runners who collapse during marathons, those who suffer heart attacks and stop breathing for any length of time.

     And this type of brain injury can affect other parts of the body. In fact, we were told within the first 24 hours of Mary’s incident, that her heart and other organs were affected due to a lack of oxygen.

       Not so. I’ll never forgive the trauma doctor who assuredly asserted all these things were true. We now know they were lining us up for the news that she was brain-dead, would never recover or live, that they wanted to withdraw life support after Isabella was born.

       Nevertheless, that oxygen deprivation has left Mary with more challenges than you can imagine, few options or choices, a battle to communicate and a memory that’s like the proverbial sieve.

      She’s not alone in her fight. She has a battalion of private therapists and aides to help her try and recover what she lost; some of her ability has come back.  She can stand now, straight as a die, as long as someone has a hand on her to steady her. She peddles furiously on a stationary bike and works hard to walk in her giant walker. We are trying to help her regain her balance. (Little known fact: when a person is confined to a wheelchair over a long period of time, their sense of balance shifts to their backs, instead of their inner ear. Regaining that takes a lot of time and practice.)

                                  

      Unfortunately, Mary has a degree of spasticity that is controlled only through certain drugs and Botox injections.  She needs 24-hour supervision and constant monitoring and care. And despite trying everything we can possibly do to alleviate her suffering, Mary is still not better, will never be better. She can improve, but she will never be the same Mary we raised. 
     And that is key to our turmoil – or perhaps it’s key to MY turmoil. Paul has handled everything about this tragedy very differently. A natural optimist, a cup-half-full kind of guy, someone who takes things in his stride, he has suffered but persevered. I’m a compulsive worrier – about every thing and every detail you can imagine. I was born that way. I have fussed, made myself ill, been mired in disbelief and horror and been a miserable sod to be around. It has been trying to accept the fact that Mary is so very changed that has torn at my heart and soul. It has been realizing that the woman in the wheelchair who struggles to say, ‘Hi, Mom,’ is the same one who tore through our house and played ridiculous pranks on all of us.

     But I get it now. I think.

     She is the same Mary. We know that for a fact. Rigorous testing last fall – the results in three weeks ago – indicate Mary’s intellect is largely intact. Her intelligence is normal, albeit reduced from her much higher intelligence quotient prior to the injury. She laughs at the same things, rolls her eyes when we argue, is delighted and happy when her daughter, Isabella, dances or sings for her. Her twin bond with Alastair is stronger than ever. She still loves to get out, still wants her daily dose of coffee, still loves her partner, still loves listening to music, still wants a glass of white wine (only sometimes if she’s out with extended family), still thanks everyone who helps her. She’s still the super polite, solicitous girl we raised and she still has a wicked sense of humour. That’s all good.

     And knowing that, it is easier to understand why her hair has been thinning from the stress of her situation, why she frequently sits and cries, why she seems utterly lost at times. She is completely frustrated by the fact she can’t speak clearly, and angry that she can’t see well enough to read her newspaper or the countless books she faithfully passed on to family and friends.

     So we continue to work on her behalf, trying to find ways to alleviate her discomfort and improve her quality of life. And while we do that, we battle the system, every step of the way, the very system that made her the way she is. We trot to doctors, specialists and therapists. We try to make life as normal as possible because Mary is, in many ways, the same Mary, albeit much altered. What we miss are the whoops of laughter, her non-stop chatter, her insight, her compassion and understanding of others who suffer, her desire to care for others. She was a social worker who worked with disabled adults. How cruel that she is now the disabled adult.

     We miss Mary. But we still have Mary – and that’s what is so bloody miraculous and confounding.

(This blog will run every two weeks, hopefully on Thursdays, and will continue to chronicle Mary’s journey and recovery from anoxic brain injury.)