Ryan’s Story

How does the loss of a child shape a family — especially when it happens a decade before you are born? Learning about my older brother Ryan’s short life and tragic death is helping me understand my family in a new way.

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Two days of the year are especially hard for my mom: St. Patrick’s Day and November 12th.

When I was a kid, I didn’t understand why my mom was so sad on those days, but when they came around, I knew something was up. I remember my dad and my sister Lacey (who is 12 years older than me) saying things like this is a hard day for mom, just be easy on her today.

Growing up, I also knew I had a brother named Ryan, but I didn’t know his full story. I was born 10 years after Ryan — now, at age 25, I am finally learning more about him and how he has shaped our family.

Ryan was born on November 12, 1988. He died on March 17, 1991. 

1988 Thunder Bay, Ontario

To her great surprise, my mom went into labour on November 12, 1988. She was somewhere between 22-24 weeks gestation — just over halfway to full term. She gave birth to my brother Ryan later that day.

Earlier that day, my mom had felt strong contractions, but her water didn’t break. Anxious and worried, she rushed to the hospital with Ryan’s father. At the hospital, the doctors confirmed she was in labour.

My mom’s pregnancy with Ryan had gone smoothly to that point. There had not been any indication that she might have complications or give birth early. My sister, born two years before Ryan, was also born early, but she didn’t have any health complications and didn’t need to be placed in the neonatal intensive care unit (NICU). When my mom went into labour with Ryan prematurely, doctors tried to stop the labour but couldn’t. The specialists and doctors warned my mom to expect the worst. They told her she would be put under for the C-section. They wanted to avoid my mom being awake in case the baby wasn’t born alive. The doctors explained that because of gestational age, they would deliver the baby but wouldn’t take extraordinary measures — like using a ventilator — to save the baby’s life.

Neonatologist Krisa Van Meurs, MD, who is an emerita professor of pediatrics at Stanford Medicine, says that in the mid 1980s babies born between 20 and 25 weeks of pregnancy had an extremely low chance of survival.

According to neonatologist Dominic Wilkinson, babies born at 25 or 26 weeks now have roughly an 80 per cent chance of survival with intensive care. Among those who make it, through, around 1 in 10 will experience significant difficulties.

Ryan was born weighing 2 pounds 1 ounce. When my mom woke up after the surgery, she found that her baby had been put on a ventilator even though the plan had been not to take extraordinary measures.

“That doctor had no business doing what he did. He made a decision that was my decision,” said my mom.

Ryan had hydrocephalus, commonly known as “water on the brain.” Excessive oxygen caused him to go blind. He also was diagnosed with cerebral palsy.  In “Cerebral palsy: the whys and hows,” Dr. Charlie Fairhurst describes cerebral palsy (CP) as a set of lifelong conditions affecting movement and posture development. CP can cause limitations in various activities and is often associated with challenges in sensation, perception, thinking, communication, and behaviour.

Newborn baby sleeping with feeding tubes attached in the hospital.
Ryan in the NICU in Thunder Bay at 3 months old.

1988-1990 London, Ontario

Ryan — only a few hours old — was rushed by air ambulance to London, Ontario because the hospital in Thunder Bay, Ontario wasn’t equipped to care for ventilated babies at that time. My mom had to stay behind in Thunder Bay because of her recent C-section surgery. On top of that, the airline was on strike, so my mom took a roughly 24-hour train ride to London three days after Ryan was born to be with him.

When Ryan’s biological father found out about Ryan’s diagnosis of cerebral palsy and other health issues, he didn’t want anything to do with him. So, my mom became a single parent and was left alone to raise my sister and take care of Ryan.

My sister, who was two years old and had been staying with my grandparents’ when Ryan was born, flew to London, Ontario to join my mom and Ryan. While in London, they stayed at the Ronald McDonald House Charities.

“Being at the sick kids’ hospital you are seeing the worst of the worst,” said my mom.

My sister made friends with some of the children, including a little girl who had suffered severe burns covering 90 per cent of her body. She also became friends with another girl, who had undergone a heart transplant — both children ended up passing away.

“I have this memory of playing with other kids, but I knew we were there because of Ryan’s appointments. I knew he was different, and I was told to be gentle with him,” said my sister.

My sister remembers using a tube to feed Ryan. At that time, my sister didn’t fully grasp that Ryan wasn’t just a baby with a feeding tube, he was also very ill. As Ryan grew older, he wasn’t meeting his developmental milestones, like sitting up and rolling over.

A young girl holding her baby brother in a hospital room.
Lacey and Ryan in the NICU in Thunder Bay in 1988.

“He just got progressively worse, the bigger he got the worse he got,” said my mom.

In London, the developmental pediatrician, played a crucial role in Ryan’s medical journey.

“I remember going to see the doctor. He laid it out to me how it was. I thought he was such a cold son of a bitch,” said my mom.

Not long after, the doctor surprised my mom by writing her a beautiful letter, telling her he recognized her dedication and he knew she was a good mother.

“I can’t recall the exact words of the letter, but it wasn’t cold,” said my mom.

1988-1990 Thunder Bay, Ontario

Although most of Ryan’s life was spent in and out of hospitals in London, he did get to go back home to Thunder Bay, where they made some precious memories over those two and a half years.

“I remember being in papa and grandma’s backyard with Ryan. He was in a playpen, with family around. The backyard had a swimming pool, and I remember everything felt fine and okay then,” said my sister.

A smiling mom holding her baby boy in a hospital room on Christmas day.
My mom and Ryan in the NICU on Christmas Day in 1989.

March 17th 1991 Thunder Bay, Ontario

By March 1991, Ryan’s condition had deteriorated.

On March 17th — what would be Ryan’s last day — his complexion started to change and his breathing was slowing down. My mom called one of Ryan’s doctors, but he wasn’t available. She panicked and frantically took Ryan to the hospital. It was starting to happen.

Shortly after arriving at the hospital, my mom was told by other doctors that there was nothing they could do. She took Ryan home and sat with him on the couch in the living room until he passed away.

“I remember lying with Ryan on the couch when he took his last breath. It was just the two of us,” said my mom.

In her PhD thesis, researcher Erin Currie looked at how parents cope after losing a baby in the NICU. Parents shared their grief experiences and despite some limitations, the study provides helpful insights and suggests ways to improve care for grieving parents. Currie found that “coping with infant death proved to be a complex process that evolved over time. Parents oscillated between focusing on the loss and living in a world without their infant.”

Ryan had what is called a life-limiting illness. As described by Currie, this means there is no cure, and life-limiting conditions can’t be fixed, ultimately leading to an early death and little hope for getting better. According to Currie, “without quality PC [pallative care] and EOL [end-of-life] care for infants with life-limiting and/ or life-threatening illness, there may be undue suffering.”

After Ryan passed, my mom called the nurses registry to explain what happened. The nurse freaked out and called the police. Once the police are involved with a death, they can’t leave until the coroner signs the death certificate. When the cops arrived, they had to treat it like a murder scene. Both officers knew that wasn’t the case when they saw my mom, Ryan, and all the medical equipment.

“I remember one cop was crying by the door, and the other didn’t know what to do and was making coffee for everyone,” said my mom.

It tore my mom apart to say goodbye with Ryan. All she wanted was to hold him close. When the coroner arrived and took Ryan away, it was incredibly difficult to let him go. The following day, my mom began arranging the funeral.

Ryan’s grave in Thunder Bay in 1991.

April 1991 Thunder Bay, Ontario

A month after Ryan passed away, my mom was angry about the doctor’s decision to ventilate him when he was first born.

My mom stormed into his office and confronted him. Her outburst echoed through the waiting room full of people. The doctor stood there in silence. He was the one who first told my mom Ryan wouldn’t make it, then made the decision to ventilate him while she was still sedated from the C-section.

Currie’s research shows that during bereavement, coping and grieving are connected. Parents use various strategies like understanding the loss, considering life’s meaning, and dealing with loneliness. How they handle grief mentally affects how well they adapt to the loss and find comfort.

“I remember telling him [the doctor] ‘Who are you to play God?” said my mom.

At the time, my mom couldn’t understand why Ryan went through two and a half years of suffering. She sought answers in various places, including confronting the doctor and asking a priest to explain what God’s plan was. Neither could give my mom a satisfactory answer.

“I couldn’t wrap my head around why, I questioned ministers about it, only to be told it’s ‘God’s way.’ God’s way for what? A child going through such pain?” said my mom.

Parents who lose a child may question their faith. In a blog post titled “My Struggle With Faith After Losing My Child” a mother Detola Amure lost her son unexpectedly and didn’t understand why God took him away from her.

“I was fully convinced that God had abandoned me. I could not understand why He permitted my son to die and why he refused to wake him up. I struggled to comprehend why God would give me a set of twins and then take one away?” wrote Amure.

In Currie’s study, she notes that spirituality is about finding meaning in life, while religion is more about shared beliefs within a group. Believing in an afterlife can be comforting for grieving parents, especially if they’ve seen their child suffer before they passed away.

For my mom, she questioned God’s plan but ultimately found meaning in her faith and spirituality. She believes Ryan is now free from pain and is watching over her and our family.

July 1991 Thunder Bay, Ontario

After Ryan passed, the world turned grey. My sister slept with my mom every night so she wouldn’t feel lonely.

In her thesis, Ester Holte Kofod explores the ways parents navigate grief following the loss of a baby. She discusses the influence of cultural norms and individual emotions on their experiences. Kofod also delves into parents’ perspectives on whether grief is perceived as an illness. A term that is common among parents who lose a child is called bereavement. According to Kofod this is defined as the feeling of having lost someone we care about or love due to death.

 Four months after Ryan died, light started to creep in for my mom. This is when she met my dad.

Thunder Bay is quite small — If you don’t know someone, there’s a good chance someone you know shares a mutual connection. That’s how my parents met.

It was summer in Thunder Bay, and my mom went to her neighbour’s house for coffee. My dad who was friends with the neighbour went over to visit and that’s when he met my mom. Not long after, they were on their third date at Boston Pizza sharing nachos. On the date, my mom suddenly felt chest pain and feared she was having a heart attack. Panicked, they left for the hospital. In the car, my dad suggested that the jalapeños might have caused heartburn. Before reaching the hospital, they stopped at a convenience store for Pepto-Bismol. My mom felt instantly better, and they had a good laugh.

After only a couple of months, my mom and sister moved in with my dad, and he seamlessly took on the role of father. With the new family dynamic, their new home became a shared and happy space.  

A woman on the left, a young girl in the center, and a man on the right, all smiling for a family photo.
My mom, dad and sister at my nana and grandpa’s house in 1991.

My sister remembers watching my dad listen to music in their new home. “It was uplifting,” she said.

My dad created a snug little corner dedicated to his love for music — a cozy nook that became a focal point in the home where sunlight poured in through the bay window, casting a warm glow. My dad stood by the stereo, grooving to the music.

According to Kofod, when healing from losing someone they love, some people feel pushed to move past grief and act “normally” again. But there’s another view that sees grief as a way to show love for the person who passed away. This aligns with the idea that holding onto emotional connections with the deceased, even when it’s tough, is more important than just focusing on being functional and healthy.

My mom keeps Ryan’s memory close to her heart. She’s found happiness with my dad who understands my mom’s journey and recognizes that she has tough days and still needs support, especially on March 17th and November 12th

November 1994 Thunder Bay, Ontario

On November 18th, 1994, my parents got married just the way they wanted. They went to the courthouse with my sister, followed by a dinner at the Airlane Hotel & Conference Centre. No one knew they were getting married, so after dinner, they rented a limo and went to their parents’ houses with bottles of champagne to celebrate and did a first dance in their apartment.

A woman smiling while slow dancing with her now husband on their wedding day.
My parents’ first dance in their apartment on their wedding day in 1994.

After visiting family, they took a drive to the United States with their two friends and went to the casino for their wedding night.

After my parents got married, they always talked about having a child, but it didn’t happen right away. Three years went by and still no luck. Both my parents tried all the things doctors told them to do. Their mindset shifted from ‘trying to have a baby’ to ‘if it happens, it happens; if it doesn’t, it doesn’t.’

“We had Lacey — I was happy with that,” said my dad.

In October, of 1997, my mom found out that she was finally pregnant. Having lost a child, she was scared to be pregnant again.

My mom’s pregnancy with me was hard. She called it “the pregnancy from hell.”

Before my mom got pregnant with me, doctors ran tests because she had previously given birth prematurely twice. They found out she had issues with her cervix. To stop me from being born early, she had to have a painful surgery to stitch her cervix closed, which meant she could not give birth naturally. The plan was for my mom to deliver me by C-section on June 1st, 1998.

April 1998 Thunder Bay, Ontario

On April 21st, 1998, I surprised everyone by showing up six weeks early weighing in at 4 lbs 6 oz. The unexpected timing had my parents on edge, especially my mom, who was worried about potential complications like she experienced with Ryan.

To add to the suspense, my parents decided not to find out my sex before I was born.

As my mom was getting ready for her C-section, family gathered at the hospital, creating an atmosphere of anticipation. My dad, visibly nervous, tried to lighten the mood by cracking jokes with the doctors and staff in the delivery room. Shortly after, one of Ryan’s previous doctors entered the room. At first, he didn’t recognize my mom by her last name, as she had changed it when she married my dad.

But, as soon as he saw my mom, the realization dawned on him, and a wave of emotion swept over the doctor and my mom. He walked over, his face breaking into a warm smile. Taking her hands in his, he congratulated her, assuring her that everything was going to be okay and that I was going to be healthy. The room filled with a sense of reassurance and my mom finally breathed a sigh of relief.

2024 Winnipeg, Manitoba

Learning about my brother Ryan’s story shifted my perspective. When I was growing up, I always knew about him, but didn’t fully understand the depth of his journey and the impact it had on my family. Discovering the challenges and heartaches my mom and sister faced during his brief life has made me appreciate the strength and resilience that runs in our family. It also deepens my admiration for my mom.

Ryan reminds me that life is precious. The love and support my parents found in each other after Ryan died reflects the power of resilience and the ability to find light even in the darkest moments.

Now when the calendar turns to March 17th or November 12th, I understand the significance of these dates and will join my family in remembering and celebrating Ryan’s life.

Headshot of Kaitlin Tomcko

Kaitlin Tomcko

When Kaitlin (she/her) gets the chance, she plans to go back to South Africa to travel. She will never say no to perogies and always has room for dessert. She is competitive and will tackle challenges with enthusiasm.