Taken in London, 2007
We left our 31-year-old daughter Mary in good shape on the evening of April 8, 2009, some
six hours after surgery to replace a blocked ventricular-peritoneal shunt. She
was relieved to be feeling so much better and, at 24 weeks pregnant, happy the
baby’s health hadn’t been compromised. It seemed the move to the second
hospital had been a good one. But it had been quite the journey to that point.
April 8
and 9 will always be two days in our lives we’d most like to forget. We mark
them mostly with silence, trying to move on. Still, one of us will start to
say, “You know what day this …” And the other will raise a hand to stop the
other and say, “I know, I know.”
April 8
was the day Mary was moved to the second facility, leaving a Critical Care
Unit, where she was placed after the blocked shunt diagnosis, to another
Toronto hospital where a prominent neurosurgeon had agreed to take the case and
do the shunt revision.
Shunts break down all the time and are needed when the
ventricles of the brain become enlarged and filled with extra cerebral spinal
fluid.
In Mary’s case, the shunt was needed three
years previously due to Chiari malformation, which is best described by Mayo
Clinic staff as “ … a condition in which brain tissue protrudes into your
spinal canal. It occurs when part of
your skull is abnormally small or misshapen, pressing on your brain and forcing
it downward.”
That
misshapen bit is a problem for the flow of cerebral spinal fluid and it can
cause the ventricles of the brain to become filled with the fluid and enlarge.
Crushing headaches, nausea, dizziness and double vision can ensue. As the
condition becomes worse, the patient can hallucinate, is disorientated and pale.
Mary was
born two months premature. Her twin, Alastair, who came along six minutes later,
was diagnosed early with cerebral palsy and had a rocky and rough childhood,
undergoing countless operations, therapies and brain surgery. We spent his
childhood years making sure he got special ed., cognitive therapies, speech
therapies, physio therapy … he grew up hard, but he turned out well.
We had
both hands in the spectrum during those years. Mary did well at school, took some gifted classes, was athletic and outgoing. Alastair worked hard
for everything he achieved.
When it
came to going to university, Mary, accepted at other universities, chose
Ryerson’s school of social work. She took to it with ease and became her
brother’s staunchest champion. She loved her work and was applying to various
graduate schools when the tragedy occurred. She wanted to do an M.A. in social
work and eventually work in a hospital.
As babies,
they were regularly checked at Sick Kids Hospital, where they spent their first
three weeks of life, and Mary, who always did have a large head (“just like
Aunt Mae,” we’d say) was checked many times for hydrocephalus. I recall doctors
examining her closely for the condition, sitting in dark rooms with residents
who shone flashlights through her tiny head. No, she didn’t have hydrocephalus,
we were told.
Again –
had they used something other than a simple flashlight, I might not be writing
this now.
But she did have it - and probably from birth.
God knows how it was missed during all those checkups. It’s just she didn’t
present with symptoms – “her own body compensating,” we were told, as she grew.
And things were fine until she was 28 and suffered from a brutal autumn of bad
colds and sinus infections.
She was
diagnosed after multiple visits to doctors, vertigo clinics and finally, a CT
scan, but only after a rocky winter and spring filled with nausea, dizziness,
vision problems and fatigue.
These
shunts get old, blocked, break down and get replaced, lives move on. It’s a
common enough thing. But Mary was pregnant and the pregnancy had probably
contributed greatly to the shunt’s blockage.
The
shunt involves a tube, or drain for the spinal fluid, which winds from inside
the brain down the back of the head, along the neck, between the breasts and is
fed into the abdomen. You can see the drain if you look closely enough when
Mary turns her head, a thin line under her skin. The pump is a small bulb-like
thing that you can feel if you run your finger over her skull. Doctors urge
patients not to press too often on the pump.
As the
fetus grew, the drain likely became blocked and the pump stopped working.
And as
Mary was so terribly ill, hadn’t walked or eaten in nine or 10 days, we assumed
when they planned to replace her shunt at the second hospital she
might get a little extra care following the revision - as she was suffering so,
so much and from so many symptoms. Wrong.
And it
seems, so we learned, that all hospitals are run by hoards of residents, clever
young things who are just learning their specialties, highly educated and honing
their skills under the supervision of surgeons and specialists. They are like apprentices
who are nearly there – but not quite. It is frightening.
Terribly
ill and as yet undiagnosed at the first hospital – where the original VP shunt had been placed
in 2006 – Mary told me, in a dazed and disoriented state, that she knew she was
going to die and she was okay with that. “But I want you to make sure they save
the baby.”
She was at her wits’ end, too ill to fight on. Mary had
yet to be admitted and was lying on a gurney in the ER, where a resident assured
us it wasn’t her shunt, it was fine, it wasn’t blocked. “See?” he said,
pressing the pump that lies at the top right of her head. “It’s fine.” He was
quite nonchalant about it all and my husband and I were becoming angrier by the
minute.
We were
appalled – and scared. It was an inkling
of some further horror yet to come.
The
comment about knowing she was going to die and that she was okay with that – a
young woman just turned 31, pregnant, vulnerable and as yet undiagnosed – was just too much for myself, my husband
Paul and Mary’s partner, Bob.
“It’s not
okay by me,” I said firmly. “I’m going to do everything I can to make sure you
and the baby are fine.”
But it
would prove harder than we thought.
Later,
on the fourth day of her admission in the first facility, after days of faffing
about with residents, I lost it, literally.
The ultimate
reason? A resident had told us she could relieve the pressure by draining
cerebral fluid.
“This
could cause a miscarriage, of course,” she added.
Well, we
didn’t want that, we told her; what we did want was a diagnosis and for Mary to
be moved as quickly as possible to a facility where there was an OB department. They’d done enough messing around, sending her in the middle of the night in an
ambulance to Mount Sinai, where a duty OB took one look at her and said, “no,
it’s not pre-eclampsia.”
Back at
the hospital, the resident, without calling us, went ahead and drained 50 ccs
of cerebral fluid from Mary and told us when it was over. The procedure offered
her only a few hours of relief.
But getting back to the night I lost it: One
of Mary’s friends had come by and Mary was offering her non-existent pizza. “My
mom brought it.” Karen’s eyes widened and she turned to me, eyebrows raised.
Bob, at
this point, had gone home, having spent almost 40 hours straight by Mary’s
side. He wasn’t making much sense himself and was beyond exhaustion.
Mary also told Karen and I that she’d been
talking to people she hadn’t seen in years. I was really becoming alarmed. She
said the surgeon who had done her original operation had been by and I knew
this wasn’t true. We hadn’t seen hide nor hair of the man – and never did.
Not once
during that five-day period did he come to see Mary. Her last day on the floor,
the night I lost it, the resident came along with a piece of paper with an
appointment on it. She told us the surgeon wanted to see Mary in his office in
10 days.
“You
ARE joking, are you not?” I snapped. “She can’t even stand!”
The
resident conceded it was bad and that Mary had to be moved on to another
facility sooner than later.
To this
day, we are astounded at the arrogance of this doctor who had a seriously ill
patient in the hospital in which he did all of his surgeries, where he visited
those patients, had an office …. And not once did he come to see the woman he
treated three years earlier. She was pregnant and extremely ill.
We are
convinced if he’d seen her in the first day or two the outcome of this whole
thing just may have been different.
So, just
who do you trust?
Later
that night, as Mary deteriorated further, I marched, as only a mother can, to
the nurses’ station, slapped my hands on the counter and told them I would
stand there until they diagnosed Mary and did another CT scan. I was angry,
furious and terrified.
(I’ve
always believed dignity and reason are a must for solving life’s problems, but
both fled the scene that night. I don’t know that they’ve returned yet. I sure
haven’t seen them.)
My anger
must have shown; the CT was done immediately, a porter and myself accompanying
Mary to the bowels of the hospital where a kind young woman was working alone
in an empty diagnostic imaging suite. Mary was so nauseous we had to call up
for Gravol. A nurse brought down a pill, which Mary couldn’t swallow, so she had
to return to the floor and come back with the drug in a syringe.
Mary was making no sense whatsoever by this
time.
I
called Paul from the suite’s waiting room at 9.45 p.m. and told him he’d better
get to the hospital fast, things were getting worse. I knew he was on deadline
(he was still working on the news desk at the Toronto Star) but there was
something very, very wrong going on and I’m not very good at being alone with
very wrong.
(That
night, by the way, was the last night of Paul’s long career as a newspaper
editor. He left right after the phone call and never returned to The Star as
the tragedy totally took over our lives. He was to not only grieve Mary’s
tragedy, he would, for a very long time, miss the job he adored.)
The CT
was read almost immediately and the results came via yet another resident, who
didn’t even introduce herself, and who stood in Mary’s darkened room and tersely
admitted she knew nothing of the case.
Yes, it was the shunt, she said. It was
blocked, the ventricles were widened. She left. I wouldn’t have recognized the
woman the next day if I’d tripped over her.
Mary was
sent from the floor to the critical care unit a few hours later where she would
be more closely monitored. She would be moved to the second facility the next
day.
Mary and Bob, 2011. She is still in hospital.
Five
days. Five days where Mary was allowed to deteriorate to the point where she
was hallucinating, disoriented, had double vision and couldn’t keep a crumb
down.
What,
we asked ourselves, was happening to the baby? Mary, at this point, hadn’t
eaten in about nine days. Would Mary ever be the same? Would she, as she
predicted, die?
Next
week: Short-lived relief
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