Coming to grips with loss

     We told ourselves, as the early days passed by painfully: You couldn’t make this up. It was fantastical. Mary was lying in an ICU, on life support, rigged with tubes and wires – not because of a car accident, a hit and run or other horrific incident – but because hospital staff didn’t properly care for her post-surgery.

     And worse, no one came to us to explain what had happened that night. We just didn’t know. Even Mary’s copious medical files wouldn’t tell us the true story.

     There was a wall of silence. And no one was talking to us, which made the situation so much worse. We felt, from the beginning, that we were treated as though it was our fault, as though Mary – or all of us – had done something wrong. And this was only due to the attitude of those treating her. It was disgraceful – now that I look back on it.

     We now know a lot more about what happened that night, of course. But that’s because we’ve filed complaints with the College of Physicians and Surgeons. The young R2’s (resident’s) response to our complaint was an eye-opener.

  We will always believe he – and the nurse assigned to Mary that night – failed in their duty to adequately direct her care after the fall in her room following surgery, and to make certain Mary’s safety was ensured.

     “Someone dropped the ball,” we kept saying to each other in the days after the horrific incident. But in those early days, and for months after, we just didn’t know how.

      I’ll never forget that night, early April 9. Yet even then I somehow knew the Mary we had raised, the one who came home, drank all our bottled water,  made us dinner, exchanged witty barbs with her father (she was so, so like him – bizarre sense of humour, long legs, long arms, tall with wildly curly hair), got the dogs in a frenzy, passed on her news and gossip, threw out sarcastic comments and left us all in a mess, but totally happy – was gone. For good.

     It would all be a guessing game now.

     Mary spent 11 weeks in a trauma/neurological ICU (where you land if you have a serious accident or have a stroke, brain hemorrhage or tumour removed, etc.), an incubator tucked just around the corner in case she spontaneously delivered her baby. This can happen, we were told, to women in a coma.

    And Mary was indeed in a deep, deep coma, far away in a world where no one or nothing could touch her. A ventilator kept her breathing, her chest rising and falling as it hissed and pumped. She was so, so still. There were a couple of computer screens that monitored various readings. I watched them blankly, the lines and numbers jumping occasionally.

    But Mary slept on. And on.

    I worried that the tape on her face holding the tube in place hurt her. I worried that she was cold as she only wore a thin blue gown, which they sometimes only placed across her body. Was she comfortable? Could she feel pain of any kind? Where was she? Could she hear us? Did she know we were there?

    And how on earth could her baby survive?

    I recall a couple of very early meetings with ICU staff doctors who had assessed Mary. These meetings were held in a small room at the end of the unit. It was crowded once everyone was seated and it was not the most pleasant place – if there even is such a spot – to be told your child is going to die.

      The room seemed to double as a small kitchen, yet it was an austere room. But not as austere – or at least emotionally spartan – as the medical staff who addressed us.

    Our first inkling that this was an unusual situation was the presence at these meetings of the hospital bio-ethics advisor. He sat in with us – Paul, myself, Alastair (Mary’s twin) Paul’s brother Marty, Bob, his mom Lorraine – as well as a social worker and chaplain, as doctors explained what had happened to Mary’s body as she was deprived of oxygen.

    

   One doctor told us that as the oxygen had failed to reach Mary’s brain, it had failed to feed other organs, too, meaning her heart would be badly damaged. Another told us she would be vegetative and never wake up as the CTs showed widespread damage to the brain. She’d never talk or walk. She’d never wake up. They were so, so sure of that.

     Another told us they would keep her alive – but only until the baby could be born. She just wasn’t coming back. And that was that. It seemed, in those early days, that just so we understood, some resident would come by daily and remind us: She’s not coming back.

    The doctor who told us she was vegetative – “I thought perhaps at first it might be locked-in syndrome, but it isn’t” – also went on to tell us we might want to consider that hospital’s palliative care unit after the baby was born as his grandfather had died there and the family had been quite happy with the care.

     This suggestion shook us.  (Hello baby, welcome to the world; goodbye our darling daughter.)

                Paul, left, and Bob, a few days after hearing the bad news.

     We were in such a state of turmoil, trying to come to grips with a coma, a lost daughter, an injury that seemingly could have been prevented, and a doctor sitting at the end of the table was talking about his grandfather and palliative care. It was too much. 

      The meeting ended, the deeply saddened bio-ethics man talked to us gently, telling us he’d told the doctor in charge of ICU that when it was time for the baby to be born, three months away at least, there was to be no pain, nothing was to go wrong, that it was all to go to smoothly. He was a kind man, perhaps the only wise one we met on our epic journey through the tragedy.

     I hadn’t known that hospital bio-ethics advisors had so much clout. But they do, apparently.

   

     The second day Mary was in the unit, at the end of that meeting, was the first time it really hit us. We left the meeting, Paul’s brother slipped away in tears, and we went back to the darkened cubicle where Mary lay, a plethora of tubes and wires keeping her alive, monitoring what seemed to be left of her life, as the life inside her continued to grow.

      There were chairs at the end of the bed and I sank into one, Paul into the other. ICU is quiet. You get used to it, the hiss of machines, like a steady rainfall but not nearly as pleasant, the quiet voices, the scribble of pens recording notes, soft footfalls, quiet patients. Very quiet patients in most cases. Next door a gunshot victim, across the way a man with part of his skull removed, a ‘left flap’ sign hanging above his bed; stroke victims, accident victims, people who have had brain tumors removed. It’s a scary place, a place you never want to visit, let alone have to visit.

       We took this all in as we sat there holding hands.  I listened to all of these soft sounds, watching Mary’s chest rise and fall to the rhythm of a machine, trying to grasp the prognosis we’d been given, the final word. From somewhere in the L-shaped ICU, I heard a terrible crying noise, a rising wail and uncontrolled sobbing and wondered who on earth would have the nerve to do that. It was a desperate, wretched sound and it was very out of place. My hands lay in my lap and I watched Mary as that sound rose and rose. It was painful to listen to.

     It wasn’t until two hands clasped my face and a voice said, “Oh, I wish I could help you,” that I realized that truly dreadful sound was coming from me. The woman holding my face was an Anglican woman chaplain who looked as desperate as I felt.

     (We’re not traditionally religious in any sense, but we are spiritual. The presence of chaplains might put some off, but I have to say I was calmed by their presence. They have an awful job, too – they work alongside science, belief systems trying to maintain a foothold amongst cold, hard facts.)

     Tears streamed down Paul’s face and he held me in an awkward sideways hug; we were two miserable people and one chaplain with an awful job on her hands.

      It had finally sunk in. It was the beginning of our grieving process, for even as Mary lived, we began the process that is still ongoing – deeply grieving what we have lost.

     It was, quite simply, the worst day of our lives – far worse than being told our son, Alastair, had cerebral palsy when he was two months old; far worse than being told he had cancer when he was 21. Even with those prognoses there was hope.

    We were now told there was no hope whatsoever for our remaining child, who until recently had been such a healthy, laughing individual.

      (And Alastair? He survived the cerebral palsy and the cancer and is a strapping man with a huge laugh that didn’t exist before he had cancer. Every day, he tells us, is a gift, a chance.)

      But this was bad. It was so bad I just wanted to die with Mary.

     I soon found out you just don’t die because you want to – and you come to realize that you can’t; there’s job to do, an outcome to achieve. You feel you somehow have to live forever to make sure everything is okay – with Mary, with Paul, with Alastair, with Bob  ….

     You have to stay alive and you have to keep things going and you have to find ways to make everything okay. Because if you grow in up a Presbyterian household as a Presbyterian minister’s daughter with that Calvinistic thing going on you have to make sure things are all right all the time. It’s the only way things are done.

     Well that’s a myth. I realize now that isn’t what you have to do – that you can’t make everything all right all the time and that you certainly can’t live forever. (I’m working on that one, though.)

    But you can, taking small steps, make a huge difference for the person you love trapped in a hospital setting. You can fight, scream, shout, disapprove and get downright demanding if you have to.

     We had to – because, damn it, things continued to go wrong in that place and if we hadn’t stuck around every single day I hate to think of what else might have happened to Mary.

   

      If you have to be truly ill – and it's not something I recommend to anyone – then ICU is the very best place to be. In ICU, patients are looked after by real, honest-to-goodness angels who don’t have to fluff their wings, adjust their halos, or arrange their heavenly garb.

    They remain resolutely positive and talk to you kindly and explain things. They’re there to monitor, care for and make sure your loved one is as fine as they can be in such a place. They want to help. And they do help.

      A few days after Mary’s arrival in the unit, a nurse explained to me that when they do emergency surgery, the surgeons just shave off the hair to make the incision and leave the hair where it is – lying in a shaved mess on the head.  So, the nurse explained, Mary still had a huge hunk of shaved hair under that green tea towel-like dressing and would I like to help her remove it?

      I would. I managed to clamber behind the bed, under wires and machines and all manner of equipment. The nurse handed me the scissors and I began to cut through Mary’s long, very curly locks to get to the mass of shaved hair that looked like a bird's nest.

    Would I like to save it, she asked. It was the only thing in the world I wanted at that moment. She handed me an empty plastic biohazard bag and I carefully folded Mary’s hair – which still smelled sweetly of the shampoo I used when I bathed her at the first hospital – and I put it in the bag. That bag is still in my night-table drawer. I’ll go to the grave with it, although I can’t explain why.

     When you know you’re going to lose someone, you hang on to the things they gave you, the little things they did for you, the places you went, the things you did.

       The night before Mary became really ill – the shunt slowly becoming blocked, the pump quitting – she came out to our east-end home and made dinner for us. She was a terrific cook. We had such a wonderful evening, the four of us, seated around the dining room table. We all have pretty good senses of humor – which has stood us in good stead and helped us keep our sanity – and we laughed a lot that night. That night was such a blessing.

    

    Mary and I took a holiday in London together two years prior to the brain injury. We stayed in a tiny flat just north of The King’s Road and we’d walk past a little jewelry shop on our way to the tube station. We’d window shop and talk about things, comment on passersby – as you do, nothing hugely intellectual.

     One day I noticed a delicate bracelet that was linked by mother of pearl hearts, tiny fish and other things. It was exquisite. And then we moved on. Mary was meeting her friends, one who was in town, another who had moved home to London a few years earlier.

    I didn’t know it, but Mary returned to that store and bought the little bracelet for me for Mother’s Day. She gave it to me over breakfast at Heathrow,  just before she flew home to Toronto and as we waited for Paul’s flight in. 

    I knew the bracelet was probably too expensive, I knew she couldn’t afford it, but I was so surprised and overjoyed with the gift.

    I’ve hung on to that bracelet like some sort of talisman since Day 2 of this whole tragedy and you’ll never find me without it.

    Because tragedy does the strangest things to you.

Next week: Refusing to agree

  

The Very Bad and Sad Truth

       April 9, 12.01 a.m. was the day we officially lost our girl, or at least the best part of her - that brain that learned so quickly, that moved like lightning, that was so wise, educated, compassionate, understanding and funny.

    We discovered the truth: Say what you will about having a kind heart, a good heart, a big heart - the heart just doesn’t hold the soul, the brain does. Even the ancient Celts knew that.

      Our daughter Mary was moved to a second downtown Toronto hospital after finally being diagnosed with a failed VP shunt and pump. Her ventricles were full of fluid, accounting for the extreme nausea, hallucinations and disorientation.      

     By the time they got around to moving her via ambulance it was almost 11 p.m. and we all trooped into the busy ER together, past the drunks and homeless, Mary babbling away, eyes closed due to the double vision, and making little sense.

      One of her friends was an ER nurse and he was on duty that night and with her through the admission, which took all night.

     The operation, we were told, would take place as soon as possible, which was about 1 p.m. the next day. The surgeon who took on Mary’s case was there throughout the surgery, but it was in fact done by what we came to know as an R2, a second-year resident. He looked about 12, I thought, as he explained to us how it had gone. Shunts “are tricky,” “a pain in the butt,” he said, and Mary’s operation was a little complicated as the original shunt had actually adhered to the brain. (The shunt is inserted through several layers of the brain.) 

    But she came through it and she and the baby were fine. (A sigh of relief here.)

    So everyone was safe, we were weak with relief and now could sleep and eat for the first time in days. That was the early evening of April 8. We left for home, all of us exhausted over the horrific experience we’d had with the health system, trying to get a diagnosis and treatment, trying to get Mary better, trying to make sure her baby would be okay, too.

                  

               A smiling and relieved Mary, early evening April 8, 2009 after 

                 VP shunt revision surgery to relieve her severe symptoms.

      But there’d be no happy ending to this story. Our relief was brief. We were about to journey to another country – one for which no passport is required. There are no maps, no resting places, the road is rocky and the ride is rough beyond belief. You want to stay away from this place. It’s a war-zone.

     As we were getting ready for bed, I was overwhelmed with an urgency to call the nursing station to see how Mary was faring. We know she’d called her best friend, Heather, in Lindsay, because Mary had phoned me on my cellphone as we drove home and asked me to call Heather in Lindsay and have her call her.  It was impossible for Mary to make a long distance call from the hospital room.

    “She really must be feeling better,” I said happily to Paul as I rang Heather.

    A social worker as well, Heather was the last person Mary really talked to.

    

     I’m persistent when something sticks in my head. I keep at it and at it. (My Scottish mother called it the ‘second sight.’ She always said she had it, that I had it. But I prefer to call it a mother’s intuition.) And so I kept telling Paul we had to call the hospital and Paul, exhausted, kept saying, “Stop worrying, she’s fine. Of course she’s fine.”

      “No, we have to call. I’ll call. We have to call.” I was insistent and so he dialed and asked ….

         I was standing on the other side of the bed listening to the one-sided conversation:

        “But she’s fine? ….You’re sure she’s fine. You’re positive she’s fine.” A kind of reluctance on Paul’s part followed. “All right. If you’re sure ….

        “What happened?” I hiss. A shake of the head from Paul.

         “All right, as long as you’re sure everything’s okay.”

        I can hear the nurse’s voice coming through the line, sounding exasperated. “Yes, she’s fine.” She repeated this several times. That’s what I remember the most. “She’s fine.”

     “She fell,” Paul said when he hung up. “She forgot she had the catheter, got out of bed to go to the washroom and she fell and hit her head.”

      “WHAT?”

       “But they did a CT right away and the nurse said she’s okay, back in bed and resting.”

       “Oh my God. The baby?”

       "Someone from OB came and checked. The baby is fine."

        What we didn’t know then, but know now: That early CT so soon after a fall … any buildup of fluid would not likely be detected. CTs tell some, but not all of the story, as we were to discover. That buildup of fluid happens more gradually.

       I can’t imagine falling on a floor hours after any kind of surgery. You’re disoriented, tired, in pain and confused.

      We don’t understand why – if they were short-staffed and didn’t have a spot in ICU or a step-down room – they simply didn’t put her in front of the nursing station and keep an eye on her. It’s seems to be an option during busy times. We’ve wended our way through beds and trauma chairs placed near the nurses’ station during busy times.

      Hospitals are great places when things go well. They boast about their successes. Mistakes? Oddly enough, not so much.

      Everyone involved in a mistake clams up and no one will give you a straight answer. The legal side of things takes over and a hard game begins, even as the family and patient tries to rebuild, move on, solve problems.

  

       Another interesting fact which we think affected Mary’s care, (it will make you want to take the bed next to your spouse, child, father, mother or whoever), nurses are only bound to check on a patient every four hours.

       Since this incident with Mary, we’ve felt that someone, somewhere ought to look into this protocol.

       On the floor where Mary was that night – where trauma and neuro patients are treated – are patients who have had brain tumours removed, strokes, brain hemorrhages and trauma to the head as a result of accidents involving cars, motor bikes, riding horses and roofs (falling from them).

        Patients who have had injuries or trauma to their brains are confused, say inappropriate things, wander, lash out, argue and always, always want to go home. I couldn’t tell you the number of patients we saw high-tail it off that floor, backsides hanging out of their gowns as they tried to escape – anywhere but there.

      I can’t say I blamed them.

        

       That night – after Paul made the phone call - we never did get to sleep, despite our sheer fatigue. We read for a while, uneasily, talking about what had occurred. And I remember thinking, okay, Mary's room is just about 10 to 15 feet from the nurses’ station, they’ll check on her, keep a close watch … she’ll be fine, she’s the only patient in the room. They’ll take good care of her, she’s fine, just as the nurse said. It was, after all, a hospital Paul’s entire family turned to time and again for care. My mother-in-law had six caesarian sections there. It was trusted.

       Then the phone rang at 1 a.m and it was Bob, Mary's partner. He was hysterical. Something had happened and the young resident had called and wanted us all there right away.

       Mary, when we got to the hospital around 2 a.m., was in medical ICU, several floors down from her room. There wasn’t space in the trauma-neuro ICU – located just down the hall from where she’d fallen several hours earlier.

      The waiting room outside the unit was dark, a couple of young women residents were talking about the incident in hushed tones and one turned and said she’d heard about it. (This young woman, a resident anesthetist, would later take on that job when Mary’s baby was delivered. She was one of the nice ones.)

     As she spoke to us, an elevator door flew open and Mary’s nurse friend, who was again on duty that night in ER, came running out. “She’s breathing above the machine,” he told us in an effort to calm us.

      “How do you know?” we asked.

      “We heard earlier down in ER that a pregnant woman had fallen on the floor and I asked if it was Mary Archer,” he said.  

      Bad news travels fast in a hospital among staff. Or was it because they knew it was avoidable bad news and that they were in the wrong? Shouldn’t someone have been watching that vulnerable patient? Who knows? But everywhere we went in that institution, people seemed to know about it.

       We were taken into the ICU unit. It was dark there, too, and all I could see was a long row of extremely ill people. Machines hissed and people breathed that strange sound made when technology takes over the business of living for humans.

        I hardly recognized Mary. She was on life support, a tube taped to her face, which was bloated and seemed bruised and blue. She was deeply unconscious, the VP shunt now strung across a green dressing on her forehead. Her lungs were rattling and making a dreadful noise.

      “What have you done to her?” I screamed at a nurse who was fiddling with one of a dozen lines.

    She was a kind woman. (I met her many weeks later in the trauma-neuro ICU.) She said nothing. I felt horrible. I don’t usually yell. Another nurse appeared and said they had to get a picc line in (a peripherally inserted central catheter, which is placed near the heart to administer meds) and we all had to leave. They were still working at a frantic pace on Mary.

     The R2 appeared, looking pale and slightly fearful. He told us she’d vomited and aspirated, that she’d suffered respiratory failure, that they’d found a dark, viscous fluid in her lungs. It would take time for the lungs to clear. He’d taken the shunt out and it was now external for the time being – the thing I’d seen on the green dressing.

       

Mary, day 3 in ICU and on life support. A nurse

told us it would be okay to take photos so we would have something

 to show Mary's child when she got older "so she knows

what her mom went through."

      Much, much later – three years later, when we sought independent opinions on what had occurred that night, one doctor who looked through Mary’s files  – an eminent man – said he believed Mary had been bleeding through the larynx and into her throat after that fall and that the viscous fluid in her lungs was blood. Was this bleeding going on post surgery, too? We’ll never know for sure. We were told very little. Did it occur as a result of the fall? We’ll never know that, either.

    In fact, there is remarkably little written down in Mary’s file about that night. The nurse did not sit down and write up the incident in the patient file after the code blue was called, Mary revived and and moved to ICU. And if notes were made, if that nurse did in fact write down anything about what occurred – well, there sure as hell aren’t any notes there now. And God knows, we’ve tried to find them.

     There are many other notes from after the event, pages and pages in two huge boxes that takes a dolly to move them. When we sought an incident report in the ombud's office – something not usually seen or handed out casually (we had to  make an appointment), the individual we met told us when an event like Mary’s occurs on the floor, it is common for very little to be recorded.

    What a good idea! Then you never have to account for what happened.

    But this doctor’s opinion of the bleeding through the larynx – from a man whose name you’d recognize in a flash and who I personally believe to be accurate – sent a chill through me. I shook for hours after hearing it.

     That first night in the medical ICU unit, before they found a space for Mary in the trauma-neuro ICU upstairs, the R2 (second year resident) was uneasy with us, nervous and abrupt. He said he didn’t really know how long Mary was without oxygen, didn't seem to know much, actually.

    

      But we’d have this discussion again.

      My last question as he eased himself out the door of the unit, backing away: “Will Mary ever be our Mary?”

      His reply: “Time will tell.”

Next week: Another world