Finding Matthew: A Child with Brain Damage, a Young Man with Mental Illness, a Son and Brother with Extraordinary Spirit

By Donna Kirk

During the first few weeks after Matthew Kirk was born -- brain-damaged as a result of oxygen deprivation during delivery -- the doctors advised his parents, Donna and Ed Kirk, to put him in an institution, have another baby as soon as possible, and get on with their life. But what the doctors didn't understand was that Matthew was their life.

Indeed, as he grew, he would surprise everyone with his athletic good looks, spirited personality, and supreme ability to create joy and love as so many people gathered around to help him through his physical and mental struggles.

Now, with the publication of this clear-eyed, laugh-inducing, and heart-tugging book, Donna Kirk recounts the story -- the love story -- of how she and her family found Matthew, and how he found them.

• Language: English
• Publisher: BPS Books
• Release date: Oct 1, 2012
• ISBN: 9781927483381

Donna Kirk

Donna Kirk's writings -- her short stories as well as the book Finding Matthew, a literary non-fiction narrative -- revolve on her family and, particularly, on her son Matthew, who was born with physical and developmental challenges. Her work has appeared in The Quick Brown Fox, Canadian Voices (volume two), Ars Medica, CommuterLit, and The Daily American, a U.S. newspaper. Donna lives in Oakville, Ontario, with her husband, Ed. www.donnakirk.com

Book preview

PART

ONE

1

FEBRUARY 1970

THE nurse leaned toward me and slid her stethoscope under the blood pressure cuff on my right arm.

Is Dr. Bennett coming? I asked.

Your family doctor’s been notified, Mrs. Kirk, she replied, her tone matter-of-fact.

I had been in labour for only two hours at home, but Ed and I were nervous. Our baby was in the breech position and we were first-time parents. Although Dr. Bennett* had been confident about a successful delivery, we weren’t so sure. We didn’t call our families when we left for Oakville Hospital, preferring to surprise them with the good news. On that snowy February night, I was happy that our house was only a short drive from the hospital.

As my labour progressed, the nurses checked me and told me things were moving slowly. Our family doctor had predicted that, even though it would take me longer to deliver because of the position of the baby, our child would be healthy. He had said something about my good pelvic structure being an advantage.

Four hours passed. Ed and I played cards but abandoned our game when my backache became unbearable.

It helps when you rub my back, I told him when the contractions came at shorter and shorter intervals.

Around midnight, I suddenly felt different. A powerful urge to push delivered one of the baby’s feet.

The baby’s coming right now! I screamed.

A nurse ran in to check me. Within seconds, a confusion of shouting hospital personnel, fast-wheeling gurneys, and bright lights filled the room.

It’s too late for a section, one of the nurses shouted.

Where’s my doctor? He should have been here hours ago.

Call the attending physician and get him here immediately, the charge nurse yelled.

What’s happening, Donna? Ed asked. His voice was thin and anxious.

The nurses hustled him off to the fathers’ waiting room, barely giving us a chance to kiss goodbye. I watched the ceiling lights blur overhead as the staff rushed me along the corridor. I knew our baby was in serious trouble. In the delivery room, an anaesthetist clapped a mask over my face and I fell into unconsciousness.

When I woke up, my baby was no longer inside me. The antiseptic smell in the delivery room stung my nose. A wall clock told me it was two a.m. Dr. Bennett stood at the end of the gurney, suturing my episiotomy. Dr. Don Campbell, an obstetrician I had visited once during my pregnancy, stood beside him. A nurse handed things to Bennett while another sorted instruments. No one spoke.

I longed to hear, Congratulations, Mrs. Kirk, you have a beautiful baby.

Ed stood beside me, crying.

Where’s my baby? I dreaded the answer.

Your son had serious difficulties, and he’s now being attended to by a pediatrician, said Dr. Bennett from behind his surgical mask.

A boy. Matthew, his name is Matthew, I said to myself.

My voice shook along with my body. Is he still alive? Where has he gone?

The baby is breathing now and doctors are doing everything they can, Mrs. Kirk.

Breathing now? I looked up to Ed, who wasn’t able to reply.

We did not see Matthew that night. Dr. Bennett told us Dr. Ted Graham, the pediatrician, had performed miracles getting my baby to breathe. It sounded to me as though miracles might not be enough: Our son was breathing but was seriously ill. When the doctors had completed the postnatal care, a nurse wheeled me into a private room.

Ed pulled a chair over to the side of the bed. We held each other and cried.

I knew something was wrong, he said. They left me in the fathers’ waiting room for so long. Finally I just left and started banging on doors until someone could tell me about you and the baby.

At thirty-two, Ed had been the last of his friends to marry, and at twenty-six, I was an old bride when we walked down the aisle in 1968. My friends had all married five years before me. Now, we were also the last to have children.

Moments later, Dr. Graham stood beside my bed, looking exhausted and sad. He reached out and shook our hands.

Mr. and Mrs. Kirk, this will be hard to take in. As you know, prior to delivery, your son was in the breech position. He came down the birth canal much faster than anticipated. The umbilical cord was around his neck, and his arms were extended over his head. He got stuck in that position, making delivery very difficult.

He paused to catch his breath. Moving closer to us, he said, The baby was born not breathing and endured lengthy resuscitation. I’m sorry to say your son was deprived of oxygen for many minutes.

I watched Ed’s posture sink. We were both on the verge of collapse.

His name is Matthew, I said. I gripped Ed’s hand in both of mine.

Dr. Graham leaned toward the bed and patted my arm. Trim and handsome, he was older than we were, perhaps in his forties.

What chance has he got, doctor? Ed said in a whisper.

If Matthew lives through the night, he’ll be transferred to the Hospital for Sick Children.*

The way Dr. Graham said the name Matthew, like a caress, soothed me.

He’ll get the care a high-risk infant needs.

And then? I asked.

He looked into my eyes and sighed. This is an hour-to-hour situation right now. We just have to wait and see. Matthew seems like a strong baby, so let’s hope for the best. Having offered what little comfort he could, he left us.

Ed and I held each other.

Why did this happen? I just want my baby, I said.

I don’t want us to go through what my parents did with Louise. Ed was referring to his youngest sister, who had Down syndrome. With nothing to offer in 1945 when Louise was born except institutionalization, which Ed’s parents refused, the family struggled emotionally and financially.

We have to hope that Matthew will be fine. I refused to believe our son wouldn’t recover.

I persuaded Ed to go home and try to rest. After he left, I fell into a fitful sleep and dreamed over and over again that Ed and I had been walking for what seemed like days. Are we on a journey? I asked, struggling to keep up. Yes, he replied. We’re trying to find Matthew.

Each time, I awoke in a sweat and rang my call bell to ask the nurses if my baby was still alive.

The next morning, before Matthew’s transfer to Sick Kids, we asked a nurse if we could see him. As Ed wheeled me down the hall to the infant nursery, I felt I was the one being deprived of oxygen. The nurse who accompanied us chattered on and on. Her words flew around me and evaporated into the air. I remembered loving the baby inside me and felt myself reaching out to him now. I clutched the arms of the wheelchair and my heart raced as we entered the infant nursery.

There’s your beautiful boy, Mr. and Mrs. Kirk, the nurse said.

And indeed he was. Matthew had a mass of blond hair, bright blue eyes, and glowing pink skin. His little fists were curled in tight balls. He wore only a diaper and looked round and plump inside the incubator. His chest heaved and convulsed as he struggled for each breath. Ed and I clung to each other.

Can we hold him? I asked.

It’s too dangerous to take him out of the incubator, Mrs. Kirk. For now, I’m afraid you’ll just have to admire him from there.

A few moments were all we could spend with our son before a nurse escorted us from the room. Shortly after, Matthew left for Sick Kids Hospital in an ambulance. I imagined I was there, too, holding him and comforting him and making everything right.

I thought about our newly decorated nursery at home. Matthew’s lovely baby clothes in the closet and his teddy bear waiting for him inside the crib. Even though we had known about the breech position, I had never expected anything other than a healthy, robust newborn. Matthew had to survive.

Later that day, Dr. Bennett, our family physician, came to talk to us. A large, imposing man with a florid complexion, he spoke to us from a distant position beyond the end of the bed. His words came in a rush.

Your son’s condition is severe. This is a great tragedy, Mr. and Mrs. Kirk. The baby has been transferred to Sick Kids. Considering his condition, he may easily contract pneumonia and under the circumstances, they may not treat it too vigorously. You would all be better off if he doesn’t survive. He took a breath and turned to leave the room.

What? Ed yelled. He clenched his hands into fists.

I hope to God you’re wrong, were the only words I had time to shout as he hurried away. I prayed that Sick Kids would help Matthew live, not let him die.

For five days, I lay in my hospital bed, struggling to find the courage and stamina to fight for my son’s rights. We longed for encouragement from Dr. Bennett, but the only news he offered was that Matthew was receiving the proper care. Given his previous statement, we had our doubts.

Let’s get down to Sick Kids as soon as possible, I said to Ed. We need to see Matthew and find out what’s going on. I just want to hold him and be his mother. For however long that might be, I thought.

Getting myself discharged from the hospital became my first objective. Bruised and sore, my body wasn’t bouncing back. I could hardly walk to the bathroom, and even sitting on one of the rubber donuts hurt. I was emotionally numb and couldn’t discuss my thoughts or show my feelings with Dr. Bennett. One night, he phoned me from his ski chalet in Collingwood. It seemed outrageous that he could enjoy skiing while we suffered.

I’m concerned. You aren’t crying. His voice sounded hollow.

He’s so worried about me now, I said after the conversation ended. Where the hell was he the night I was in labour with Matthew?

But I didn’t have the courage to confront him.

In fact I cried constantly. Whenever Ed came to the hospital, we cried together. When family and friends visited, everyone cried.

One day a nurse walked into my room and found me sobbing. What’s wrong with you? she said in a cold voice.

I was astounded. Surely everyone on the nursing staff knew of the tragedy of Matthew’s birth. I asked to be discharged.

Dr. Bennett refused to let me leave the hospital until I had spoken to a psychiatrist. I wondered if this meeting could have been avoided if I had told him how heartbroken we were and how angry I was about what had happened to our son. But his words you’d all be better off if the baby didn’t survive had stopped me from sharing my feelings.

The hospital psychiatrist, a diminutive but imposing figure in a rumpled black suit, entered my room and approached me with his hand extended. He introduced himself as Dr. Samuel Jordan* and sat in a chair across the room. The perfect caricature of a psychiatrist, he spoke in a whisper, making constant efforts to smooth his bushy beard and unruly hair.

After I answered each of his questions, there was a long interval in which he sat looking at me, blinking. I began to fidget. What was he thinking?

I just wanted a baby, I said, weeping and twisting the tissue he had handed me into a soggy ball.

Mrs. Kirk, you have a baby. When he’s well, why don’t you and your husband take him home and love him?

I sat straighter. Hearing this doctor acknowledge our son as a viable person gave me courage.

He stood up. Look after Matthew, Mrs. Kirk.

In ten minutes Dr. Jordan had restored my spirit and empowered me. Ed waited outside in the hall with my suitcase. We left immediately for Sick Kids in Toronto.

_____________

* Not his real name.

* Commonly called Sick Kids Hospital.

* Not his real name.

2

SICK KIDS

WHILE we drove along to Sick Kids, my fears returned. How might the brain damage have affected our baby? I tried to remember what Matthew looked like, but the pictures in my mind danced and blurred.

Do you think he’s still in an incubator? I didn’t add that he probably needed all kinds of machines to keep him alive. I hope he’s breathing better.

Ed seemed to be concentrating on driving, though he was flushed and sweating that cold February day. We’ll soon find out, he said. We saw him for only a few moments nearly a week ago.

We had received so little information from Sick Kids, I wondered what doctors really knew about brain-damaged babies and whether they cared. I couldn’t forget Dr. Bennett’s words. The psychiatrist had been comforting, but he hadn’t seen Matthew and didn’t know anything about him.

Finally, Sick Kids loomed in front of us. Ed managed to find a space for the car in a crowded lot at the back of the hospital. Dizziness overcame me as we walked toward the entrance. I grabbed Ed’s arm. I’m going to faint. I feel so weak.

He ushered me inside to a chair near the information desk. You sit here. I’ll find out where Matthew is.

Inquiring about our son’s location, finding the appropriate elevators, and arriving at 7G, the newborn ICU, happened in slow motion. We were all thumbs when we donned the sterile gowns, booties, and caps required to enter the ward. Finally, we opened the door to an enormous white room filled with more babies than I had ever seen. The tiniest ones lay in incubators, hooked up to a maze of hissing, throbbing machines. The smell of disinfectant would discourage any germ from invading that territory, I thought.

You can stop crying now, Matthew. Your parents are here, said someone behind us. We spun around to see a nurse who introduced herself as Miss Violet Gayle. I thought it was odd that she referred to herself as Miss. Her unusual style disarmed me.

Here he is, Mom and Dad. She gestured toward a tiny, wailing infant lying in one of the steel cribs.

To my surprise and delight, Matthew wasn’t attached to any equipment. He occupied so little space in the huge crib. Could this be the same plump, rosy baby we had seen in the incubator nearly a week ago? But I recognized the beautiful blond hair and tightly closed fists. His nostrils were such little pin-pricks, I wondered how any oxygen got through. We stared at our son, afraid to touch him. By this time, Ed and I were both crying.

He’s been waiting for you, said Miss Gayle. Don’t worry. He’ll be all right now that you’re here. She handed us a box of tissues. I’m sixty-five and officially retired, but I work here part-time because I love babies.

Miss Violet Gayle was tall, brisk, and British. Her grey hair and friendly manner gave her a grandmotherly appearance; she seemed to be the perfect person to care for sick infants and reassure their parents.

Although we couldn’t assume her cheerful manner, we had no choice but to follow her instructions. She escorted me to an oversized rocking chair, then plucked Matthew, yelling and flailing, from the safety of his crib and placed him in my arms.

Even though I was afraid of him and terrified to be his mother, I felt compelled to hold him.

Just hold me tight, said Miss Gayle, speaking for Matthew. We need to get to know each other.

Ed stood beside us, looking relieved that she hadn’t handed the baby to him.

Your turn next, Dad, she said, with a wink in my direction.

He has so much beautiful hair, I managed to say, through my tears.

He’s just perfect, Mommy, said Ed. He was on one knee in front of us, holding Matthew’s little hand.

With this first encounter, I knew we were committed for life.

He’s out of the incubator and breathes normally now, I said, looking up at Miss Gayle. Isn’t that a step in the right direction?

He’s stopped that horrible jerky gasping, Ed said. And he sure can yell.

Matthew weighs six pounds, said Miss Gayle. He’s gained weight in the last few days. Our son had weighed seven pounds at birth.

I can’t remember if Matt cried throughout our first visit, but we sure did. Ed and I took turns holding him. Frequently, Miss Gayle or one of the other nurses offered cheerful comments and words of encouragement.

A nurse wheeled a machine with a long wand and rubber hose attached to it over to the rocking chair where I held Matthew. She snapped open a small plastic device from a sterile pack and attached it to the hose. She flipped a switch and the machine made a loud sucking noise.

Matthew, look this way, sweetheart. She turned his head in her direction. His swallowing reflex is not fully developed, she said in answer to my surprised expression, then inserted the wand into Matt’s mouth. Mucous gurgled into the tube.

Shock rippled through my body. Our baby couldn’t swallow his own saliva. We also learned he was fed by gavage, a tube inserted through the nostrils into the stomach. Sucking and swallowing, those two basic functions, were things Matthew couldn’t do. We watched his feeding process, which was over as quickly as it took the liquid to disappear down the tube and into his stomach. No one held him during the procedure. The nurse just poured the milk into the tube through a tiny funnel as he lay in his crib. This technique kept our son alive, I thought, but how could a baby ever develop without being picked up and cuddled?

With their busy caseload, the nurses didn’t have time.

I have to be here every day, Ed, I said, no longer feeling tired and weak. Matthew needs me and he won’t get any special attention on this busy ward.

He nodded. I’ll come in after work so I can see him, too, and give you a break. Without actually speaking the words, we were determined to give our son every possible chance to thrive.

Ed, a chartered accountant, had an excellent position with a Mississauga land development company. I had been able to quit my job as a recruiter of dental nurses shortly after we married. Travelling all over Ontario to various dental offices and being away from home at least three days a week no longer appealed to me. In the 1960s and 1970s, none of my married girlfriends had professions or jobs outside the home.

We wanted to concentrate on having a family, and I enjoyed putting our stamp on the tiny Cape Cod house we had purchased in Mississauga. I sewed decorative cushions and drapes for the windows, and Ed and I argued our way through wallpapering the spare bedroom. His accountant’s brain needed every seam and angle to be perfect; I just wanted to get the job done.

A year after I miscarried in my first pregnancy, we conceived Matthew. In the late 1960s, we were considered old to be starting a family. I was an only child, and Ed was one of six. We had thought three children would be a comfortable number for us. Now, after giving birth to Matthew, I wondered how I would ever get through even one more pregnancy without worrying myself to death.

Matt’s troubles taught us to be more aware of what could happen and to participate more actively during prenatal care. We decided if I became pregnant again, I would go to an obstetrician from the very beginning. And, if our second baby also lay in the breech position, we would insist on a caesarean section, which was not a common practice then.

Before leaving Sick Kids that first day, I uncovered Matthew. His shirt and diaper were enormous on him. Once free of the swaddling blanket, he moved his arms and legs, particularly his left arm and leg. His right side seemed slightly slower and less active. I reached down to him, prying open one of his hands. The gentle pressure from his little fingers reassured me.

As we were leaving the ward, Miss Gayle introduced us to the head nurse, a tall woman with jet-black hair, bright red lipstick, and a steady, intimidating gaze. We spoke for a few moments about the size of the infant unit and how overwhelmed we were about everything that was happening to our son.

Do you think Matthew has improved since he’s been here? I asked.

Matthew is receiving the best of care, Mrs. Kirk, she said. Her eyes avoided mine.

Will his swallowing get better?

"Only time will tell how much improvement he makes. My suggestion is that you see Dr. Carter,* the head of pediatrics, tomorrow morning to discuss your son’s condition. I can make that appointment now, if you like."

We waited in the hall while she scheduled a time for us. As we walked back to the car, Ed said, Do you think she’s keeping information from us?

What could be worse than what we’ve already heard? At least he’s doing much better than last week. I stifled a yawn. I’m so tired, let’s just go home and get some sleep. I didn’t want to think about what could be coming next.

I can’t believe we left Oakville hospital only a few hours ago, Ed said on the drive home. I’m glad we came right down to Sick Kids. I couldn’t have gone another day without seeing him.

He looks so small and delicate, I said. How would I ever cope with such a fragile baby?

Small but feisty, Ed replied. That’s my son.

_____________

* Not his real name.

3

VEGETABLE WITH A HEARTBEAT

GOWNED once again in sterile attire, Ed and I stood in the hall outside ward 7G. The charge nurse had just introduced us to Dr. Carter, the head of pediatrics, and an intern who accompanied him. I had expected our discussion to take place in more private surroundings. Instead, without any preamble, the doctor looked at his watch and launched into a clinical speech about severe brain damage, echoing what we had already heard from our family doctor. Possibly in his mid-forties, slightly built, and impeccable in his clinical coat, Dr. Carter seemed anxious to get through the meeting.

He fidgeted with the ID badge clipped to his front pocket. In my experience, babies like your son make little or no progress. His brain can never recover from the injury. Your child will never know you or learn to do anything. My suggestion is that he be placed in the Christopher Robin Home, an institution for infants located close to Toronto.

The intern, a bulky, younger man, stood quietly, his gaze intent on Dr. Carter.

The lack of a best-case scenario for Matthew shocked and dismayed me. The day before, I had heard a nurse discussing the transfer of one of the infants to this home and had kept the information to myself. The thought of abandoning my son made me shudder.

I’ve never heard of such a place, Ed said, his voice cracking.

Our hospital can help you with the application, said Dr. Carter. He focused his eyes somewhere in the distance. This is what I would do if he were my son. The best thing for you both would be to have another baby as soon as possible.

Matthew isn’t even two weeks old, I said, on the verge of tears. How can you write him off so quickly?

I took Ed’s hand and closed my eyes, wishing this would all go away. We stood facing these two doctors with no choice but to listen.

Mrs. Kirk, children with extensive brain damage like your son’s frequently do not live beyond the first weeks. However, should he survive the next two months, he will be discharged to your home until space becomes available at Christopher Robin. There was no emotion in his expression, but his flushed face and closed hands told me he didn’t enjoy delivering devastating information. The Hospital for Sick Children is a well-baby hospital and cannot assume the duties of an infant home.

As far as Dr. Carter was concerned, Matthew had already been placed in the institution.

What does ‘well-baby hospital’ mean? Ed and I asked, almost in unison.

This facility is not meant for long-term care and cannot house patients who will never progress. The words that came next were directed to the floor in front of our feet. But, we will be able to supply you with a suction machine and any other vital equipment necessary for home use until placement is possible.

A suction machine? That thing we saw the nurse using to relieve Matthew of his excess saliva? What other vital equipment? I pictured us taking turns staying up all night suctioning Matthew at frequent intervals to keep him from drowning in his own saliva. According to Dr. Carter, there was only one option for Matthew if he survived beyond two months. I knew in my heart right then I could never place my baby in an infant home. Ed’s parents had been totally devoted to their daughter Louise, who had Down syndrome, loving her all the more because of her limitations. Ed had told me how he hated the thought of our experiencing what his parents had been through. However, after holding Matthew the day before, he said he couldn’t imagine life without him and now understood why his parents were so dedicated.

You also need to be aware that death can occur suddenly even if it survives long enough to go home from this hospital, Dr. Carter said.

If he, I thought. He.

Dr. Carter hadn’t once called Matthew by name. Perhaps he didn’t know his name. Perhaps he didn’t consider our son a person. Now I pictured going to Matt’s crib and finding him dead. How were we going to cope? My head ached so intensely I couldn’t be sure I had heard correctly. But the most chilling statement was yet to come.

Your son, the intern said, is a vegetable with a heartbeat and should be institutionalized as soon as possible.

That snapped me to attention.

What? Ed shouted. He stepped closer to the intern.

You have no right to condemn Matthew! I said. We’ll prove both of you wrong. Matthew may not be perfect but …

The doctors’ expressions told us this interview was over.

Until that moment, we had been insulated by our youth and inexperience. Now a foul wind had blown over us, sweeping away any hope. The prospect of caring for such a fragile infant at home made me feel sick. We were inadequate compared with these professionals who refused to care for Matthew. It appeared that our child was a hopeless case, and soon we would be the caregivers, ready or not.

Ed and I found our way to the infant ICU. Fortunately, Miss Gayle was on duty. She wore no jewelry or makeup and her grey hair was arranged in a short wash-and-wear style. Her straightforward manner and no-frills appearance told me she didn’t care about superficial things and devoted herself to her job.

After settling Ed and Matthew in the huge rocker, she took my hands and