If you ever see a child face death, it will change your life forever.
PROLOGUE
As a reporter, the screech of a siren had me jumping out of my car, recorder in hand, ready to capture the next local tragedy for tomorrow’s front page news. As a soon-to-be mother, I knew it would be the screech of two crying babies that would have me jumping. My husband and I were expecting twins.
Leaving one life behind and picking up another in a moment's time -- two moments in my case -- for the birth of baby A and baby B - is overwhelming to think about.
Or maybe it's just the hormones: my husband's explanation for all my moods these days. I am never "really" mad at him because he actually did something wrong; it's just my raging hormones talking.
Aside from the normal aches and pains, fatigue and nausea, my pregnancy has been a positive experience.
However, I am sometimes jealous that my baby bump gets more attention than me these days.
I am no longer Carla Garrett; I have become the “really pregnant girl.”
And now, I've come full circle - reporting on those first seven years as a mother. My son... childhood cancer... he's forever seven to me…
My life was my byline. I was becoming a household name in the City of Woodstock where I was a journalist for the local newspaper, The Sentinel-Review, for five years. I covered the crime beat, chasing ambulances and fire trucks and hanging around the courthouse with murderers and drug addicts.
I was described by my sources as a fearless beauty with a passion for news. I was an adrenaline junkie who conquered the truth - or at least tried to with my fairness and professionalism.
It was a cold Friday afternoon in January and the day was winding down. I was on the weekend shift, but I was eager to get out of the office for the day. I bit the end of my pen as I randomly searched the Criminal Code for any interesting charges I could write about.
Then I heard it. The scanner in the corner of the office crackled and buzzed out a loud tone.
“Attention Beachville Firefighters …” the voice on the scanner cut out.
“Attend a multi-vehicle collision on highway 401”
I stopped what I was doing to listen.
“Possibly 15 to 20 cars… unknown injuries.”
With that, I whipped the camera bag over my shoulder, grabbed a pencil (because pens freeze) from my desk drawer and the car keys with my other hand.
The weather was quickly deteriorating. Heavy snow covered my car windshield within seconds. The snow laid a white blanket on the black asphalt road. My tires spun. I pressed on.
I knew the highway would be closed, so I veered down a sideroad while calling my sources for information on the exact location. Parking the car in a snowbank in front of an old farmhouse, I walked up to the front door. Without hesitation, I asked the homeowner permission to walk through their field to get to the highway. They agreed and handed me extra mitts and a hat.
My heart pounded with excitement. No other media outlet had gotten access to the scene yet.
The snow was up to my knees in the field, soaking my jeans that now clung to my cold wet legs. I came to a wire fence at the edge of the farmer’s property and climbed over. My jeans ripped. I carried on.
First jumping over a small stream, I headed up an embankment. At the top, I could see the highway littered with cars and emergency personnel. Now crawling to make it up the slippery, snowy hill, I was just inches from being the first to capture the devastation.
A siren wailed.
***
If there was tragedy, I was there. In the courtroom, on the highway, or in the apartment parking lot during a heated standoff after a woman was stabbed by her deranged boyfriend. As a crime reporter, I relied on other people’s pain for my next pay cheque.
That day at the apartment stand off, I came face to face with the victim’s daughter, who looked to be only about 11 or so. Her matted brown hair was wet from tears, a backpack slung over her shoulder as she zig-zagged down the parking lot towards me, looking lost and in obvious shock.
I don’t remember exactly what she said, but I walked her to the road to a police officer guarding the perimeter and he took care of her from there. That poor girl had just witnessed the worst in humanity. Her innocence ripped apart by a raging man with a knife.
My career got started with a high-profile murder case of a toddler. It was my first day on the job as a novice reporter at the daily Sentinel-Review when I learned of this horrific crime through the Crown’s opening statement. The child was killed by her mother’s same-sex partner by asphyxiation and then stuffed in a garbage bag, hidden in the couple’s basement in a box labelled dog biscuits.
The worst stories to write were after someone had died. Having to make that call always made my stomach wretch, especially when it was a child. Sometimes the parents were thankful and appreciative of the opportunity to memorialize their child’s life in the newspaper, others were downright disgusted by my lack of empathy and invasion of their privacy.
There was one family I called and they were neither kind nor angry. They were just plain drunk. A day earlier their son had been struck by a train on the tracks about a block away from their townhouse.
I questioned their parenting skills back then, wondering how irresponsible of them to be drinking – until I was them.
The job of mom will take me away from my job as a crime reporter. To my surprise as I packed my belongings from my desk -- a stuffed moose and target from the OCPS citizens' police academy, a John Deere model tractor from Leaping Deere Legends and a mini blue stress ball from Oxford EMS, along with countless photos of random people and things I came across in my work that made me smile -- I didn't feel as sad as I thought I might.
Instead, I also came across items that reminded me of the adventure ahead -- a sticky note with my due date (in case I ever forgot), a pen from my pre-natal classes and the pile of snacks I had stored in my desk for those ravenous cravings.
I wrote a lot of front-page stories. For years I chased other people’s tragedies and never gave it much thought - that was until it hit me like a bad game of tag.
I was it. Now I am telling my own family’s front-page story, reporting on those first seven years as a mother of a little boy I couldn’t keep. The stories that didn’t make the news.
CHAPTER 1 - Meeting Martin: the diagnosis
Facing the fight of his life
By Heather Rivers, Sentinel-Review
It’s just starting to sink in for a young Woodstock couple. Just over three weeks ago, Carla and Mark Garrett were told by a Brantford doctor their son Xavier may have Norwalk virus.
Today, the nine-month old is facing the fight of his life.
(Published Feb. 24 2010)
I gripped the steering wheel, tears rolling down my cheeks as I weaved through rush-hour traffic in my little blue Corolla.
I will not bury my child, I will not bury my child… I will not bury my child!
I didn’t even know what was wrong with my baby boy, but my gut told me it was bad. Fear crawled up my throat the closer I got to the hospital. I was speeding, but the 30-minute drive still felt like forever as I re-read my husband’s text message:
“Xavier is going for an emergency CT scan, doc thinks it's in his head.” And that was it. There was no explanation, no more information, just myself, my anxiety and my raging imagination behind the wheel.
***
Now, 10 years later, I travel that same highway to meet the same doctor whose diagnosis that day back in 2010 changed our family’s life forever.
The sun was shining as I drove along highway 403 towards Dr. Martin McIntyre’s house. My stomach gurgled. I already had a bout of the nervous pees before I left my house in Woodstock. (It was a problem I developed over the years in high-stress situations).
As a reporter, I had met and interviewed many people before, from high-ranking police officials to convicted criminals and grieving families. The best interview was with a strung-out druggie who couldn’t stop smacking imaginary bugs crawling on his kitchen table, sending ashes from the dozens of half-smoked cigarettes flying into the air. We chatted about his lifelong addition to cocaine and his first high while working in the oil fields in Alberta.
But this interview was different. This time it was about my life not someone else’s.
It had been a decade since I last saw Dr. McIntyre in a dimly lit emergency room at Brantford General Hospital. We were huddled around a small computer screen looking at the black and white images of my 8-month old son’s head. The doctor pointed to a white blob in the centre of my little boy’s brain and said, “that shouldn’t be there.”
I turn up the music and sing my heart out to the 90’s hit Wonderwall by Oasis to calm my nerves as I continue my drive.
Dr. Martin McIntyre
We meet at his sprawling bungalow along the Grand River and sit in the shade in his backyard garden overlooking an inground pool where only days earlier his grandchildren went for a swim in their birthday suits. His shy smile says it all. He is a proud grandpa who would do anything to make his grandkids - a set of twin girls - smile, even if that means keeping the pool (and all the associated work) open only for the enjoyment of his grandkids. The water has to be 85 before he will swim, but the kids, they are splashing around in there as soon as the ice melts.
After some small talk, we move into his sunroom and I pull out the white sheets of paper stapled together from the hospital’s records department. Martin’s name is on them and his handwriting on the triage record from January 27, 2010.
I pull a wicker chair up beside him as he reads through the medical reports.
Generally unwell, episodes of vomiting, generalized muscular weakness… the report reads.
There was nothing worse than knowing my baby was sick, but not knowing with what. I watched my poor little boy projectile vomit over and over again for weeks, as I repeatedly walked out of emergency rooms and doctor’s offices without any definitive explanation for his intermittent symptoms. It was an ear infection, a gastro issue or possibly torticollis, which prompted the referral to Dr. McIntyre.
When he wasn’t crying, Xavier was a happy, easy-going baby. He and his twin sister Mackenzie would babble together like they were talking in their own secret language. Mackenzie strings together a bunch of coos and baas and Xavier throws his head back in full belly laughs. It was clear from the start that Mackenzie was the more dominant twin; she was also always the one to kick me in utero and proved to be the more difficult delivery.
But Xavier seemed to enjoy her take-charge attitude and most of the time found her antics funny, except when it came to his most treasured possession -his yellow bee blanket. One day as they sat side by side in their Bumbo chairs, Mackenzie in her usual fashion started grabbing toys from him. First a rattle, then a red chewing ring, but when she went for his blanket, he let out a shriek. His big blue eyes welled with tears and reddened around the lids as he cried out. Oh, sibling rivalry starts early!
Mackenzie went on to say her first words and as much as I would have liked her to say mama, she said dada. It was so clear considering up to this point she would only make funny noises with the spit in her mouth. Unfortunately, Xavier was still working on his vocabulary behind cries and ear-piercing squeals.
It was already hard being a first-time mom of twins, but when one was constantly ill, it proved even more difficult.
There were days I was ready to give up. My husband Mark was back to work and I was home alone on maternity leave as a first-time mom - with twins. Xavier’s incessant crying had me literally pulling my hair out and I could see my bright blond strands of hair becoming more of a gradient grayish-white from the stress.
One day I was so frustrated, I remember yelling at Xavier. He was only about six months old. I kept telling myself he’s just a poor little baby, my screams won’t help, but I was too frustrated to understand reasoning. I put him (into his swing (harder than I should have) and walked away. I left him there alone, crying in the dark basement. I knew it was the safest thing to do at that moment. When I came back after taking a few minutes to breath, I cried with him in my arms. I felt so guilty for losing my calm and vowed to never let myself get so upset again.
I never told anyone about that day.
But my insecurities as a new mom grew as Xavier’s health deteriorated. When he started losing weight, I was worried I did something wrong. Martin seemed to understand this when I told him, nodding in agreement like it was something he might have heard from other first-time moms, not wanting to admit, that just maybe their baby was less than perfect.
Martin, I say, thank you for figuring out what was wrong with my baby so quickly.
He removes his glasses, and his pale blue eyes look into mine before he drops his head and says,
“I can’t believe it took me three visits.”
Martin trained in Ireland before completing his residency in Winnipeg and pediatrics at Toronto Sick Kids. He settled in Brantford where he had a practice between 1977 and 2018. He never knew why he chose to specialize in kids, but just knew he didn’t want to be a general practitioner like his father.
As we talk, Martin says a lot of kids just disappear after a serious diagnosis requiring tertiary care. Some doctors are good at sending reports, but most often, he says, they just send reports to the family doctor and he never hears about them again.
“We are looked at as dummies, they don’t think we need to know, but we do,” he says. “It’s about continuity of care.”
He pauses.
“And, that’s my rant.”
Xavier was one of those patients. A name on a report one day and gone the next. Unlike Martin who has no memory of me or Xavier, I remember Martin.
Now, I want him to get to know that name. I want him to know what happened to that boy after he found that “big, big mass” in his brain.
I want him to know my boy was more than a name on referral.
I tell Martin about our first visit to his office. He was quick to rule out torticollis, a condition which often causes a child to tilt their head to one side - something Xavier had been doing since about six months old.
Dr. McIntyre’s bushy red eyebrows furrowed as he scratched his head examining Xavier during that first visit in the emergency department. He left his practice early that day to come see us before heading home.
He was quiet and spoke only when spoken to. His matter-of-fact demeanor was not rude, nor pleasant. It just was. I could see the wheels turning in his head, unable to really put his finger on what was wrong with my baby.
During the visit, nurses took blood from his tiny little arms. The first time they did it (yes they had to do it twice, poking both arms the first time) I stood out of view, but could still hear Xavier screaming. It was a gut-wrenching feeling, one that broke my heart. When they came back for more blood I had to stay and try my best to console my sick boy.
I almost started crying as I sang Twinkle Twinkle Little Star to him while they poked his now bruised arm for blood.
Xavier had not been eating well, throwing up and growing increasingly lethargic over the week before. I remember trying to feed him in the emergency waiting room. He had thrown up everything all day, and he continued to projectile vomit repeatedly as we sat there. At one point I had run out of rags to catch his vomit with and motioned to the triage nurse to quickly find me something to catch his puke with.
After several hours, Dr. McIntyre returned. AS we sat on an empty gurney in the hallways, he said Xavier’s blood work was normal, ruling out leukemia and other blood-related cancers. about the blood test results. I felt some relief as it was in back of my mind. He said it could be a virus, possibly Norwalk, which was very common and spreading in nursing homes at the time. He suggested we give it a few days and then come back to see him if there was no improvement.
That day I came home and wrote in my journal:
Not only am I sick with worry for Xavier, I felt terribly guilty and bad for Mackenzie who has had a lot less of mom’s and dad's attention these days.
And today she started crawling! Although they are twins, these two are on complete opposite spectrums right now. It is difficult to see one thriving and the other falling behind.
But I am so excited and so proud of Mack. It is just adorable to watch her pull herself across the floor (it is a sloppy crawl, but she is still learning).
Xavier has not been eating well for a while and continues to vomit at least every other feed. He began sleeping more, not less like his sister, and woke frequently from what appeared to be stomach pains. It was extremely hard to see him like this. He has lost a pound (was 18lbs9oz not 17lbs12oz) and lost all interest in play. He and his sister will soon turn eight months and Xavier acts nowhere near this age. I fear his on and off again sickness is holding him back.
Three days after the all clear from Xavier’s bloodwork, my husband Mark took Xavier back to emerge while I stayed with Mackenzie. We had an appointment at Dr. McIntyre’s office that day, but Xavier was too sick so he went straight to the hospital where Martin met my husband. I waited for answers.
By now I knew there was something seriously wrong with Xavier. He always had red puffy eyes from crying and dark bags underneath. Even when he was wide awake, he still looked sleepy. I remember holding him close to my chest as I walked around the house trying to sooth his crying and there was just a feeling, an intense knowing, that he was not ok.
Martin, a father of three boys himself, lived by the rule that if mom was overly worried, then the child had to be seen that day.
“Almost every time their feelings were validated,” he says. “Trust your intuition, you know your child and what’s not the norm.”
Xavier was one of only four children he diagnosed with a brain tumour - only two malignant - in his 42 years as a pediatrician in a city with a population of about 100,000. He remembers his first patient, a 15-year-old boy who came in with a headache.
“I missed it the first time,” he says. “I didn’t check the eyes.”
He explains how the pulse of your eye can help detect a brain tumour. When the boy came back again, Martin checked his eyes and diagnosed the teen with a brain tumour.
This was before CT scans, which revolutionized how doctors made a diagnosis. He tells me how they would have to insert air into the spinal fluid and X-ray the brain to see the air because fluid would not show up on X-ray. They were called brain air studies and cerebral angiography. It wasn’t until the early 1970s, when computed tomography (CT) was available and neuroimaging was catapulted into a whirlwind of progress with new technologies and treatments. It was not until the 1980s that MRIs were conducted on children.
His next brain tumour patient was a five-year-old girl, and he was sure not to make the same mistake twice. He diagnosed her on the first visit with an astrocytoma.
But what had stumped him years ago with Xavier, was so obvious to him now as he read the medical reports again.
“It bothers me it took three visits,” he throws his hand up and sighs.
“To miss something as demonstrous like a head tilt…
I could feel Martin’s disappointment in missing - or dismissing - this classic textbook sign the first time he saw Xavier.
“It’s like the coronavirus — doctors didn’t find it initially even with all the information. “We tend to do that – to downplay it a little.”
The majority of GPs, however, may not diagnose a patient with a brain tumour during their whole career so the symptoms may not be familiar to them. However, in children younger than two years, the most common initial symptoms were seizures, vomiting, head tilt and behavioural changes. These signs are by no means specific to only brain tumours, making the diagnosis in the early course often difficult.
In a quick Google search in 2019, “brain tumour symptoms in children” yielded no results that included “head tilt” until specifically searching head tilt and brain tumour. A few reports from the UK popped up stating it as a very uncommon sign… even the Brain Tumour Foundation of Canada omitted this sign in their symptom list.
Research has shown that in most cases under two years old, for poster fossa tumours – like Xavier’s- a child presents with a head tilt. It was the first sign we noticed in Xavier, aside from irritability, which is easily passed off as a colicky baby, and being generally unwell with recurrent ear infections.
If it can help just one practicing family doctor or pediatrician, heed this message, says Martin: don’t dismiss this sign just because it’s not in the medical books.
“That’s why you want a good doctor, not just one with a good personality, you want the competency, the medical skill because they are the doctors who can pick up on that one child who is actually really seriously ill,” says Martin.
And he did. That night at the hospital Martin knew to look inside my baby’s head and not to send us home again. And to our horror, he found something. Not just anything, but a “big, big mass”
We loaded Xavier into his car seat, still sleepy from the sedation for the CT scan and left for McMaster Children’s Hospital. And that was the last time I saw Martin.
NEXT: CHAPTER 2- A little boy and one bad cell
Part 1 - It’s human to hurt
