Zeynah’s story: Turning a family’s loss into an incredible gift

Zeynah’s story

April 19, 2024

Trigger warning: this story deals with the death of a child 

When Maryam describes her firstborn daughter Zeynah, one of the first things she speaks of is her willingness to give.  

“She was a really kind, considerate child, she would give everything to others if she knew that they needed it, even if that meant she would have to go without,” Maryam recalled. “Sometimes I'd say ‘No, don't give your last sweet because I don't have any more for you,’ but she would give it. She was really interested and invested in other people's wellbeing.”

In the spring of 2023, shortly after their family moved to London, Zeynah suffered a cardiac arrest brought on by a medical event. While she had a history of health issues, her family quickly understood this incident was far more severe than anything she’d experienced before.

Zeynah was brought to Children’s Hospital at London Health Sciences Centre (LHSC), and within a few days her care team determined she was clinically brain dead.  

Maryam said the team at Children’s Hospital rallied around the family to offer end of life care, and part of that conversation included asking whether they would consider donating Zeynah’s organs.  

Their answer was a resounding yes.  

“My husband and I have always signed up to be organ donors,” Maryam said. “And while you never think about that for your children, we were presented with this option and I think knowing the kind of person Zeynah was, she would have wanted to give to others in that way.”

What does the process look like?

Maryam and her family began to work alongside Meaghan Wheeler, Specialist, Organ & Tissue Donation with Ontario Health-Trillium Gift of Life Network. Maryam said they felt an instant connection with Meaghan as she helped guide them through the organ donation process.

“Meaghan was there for us and answered 1,000 questions from me, my husband and all of my family,” Maryam said. “She was really patient and explained our options.”

Meaghan acted as a liaison between Zeynah’s family and the Ontario Health-Trillium Gift of Life Network. She worked to coordinate appropriate testing to ensure organs could be accepted for donation and communicated directly with Maryam and her husband to share updates on possible matches.  

“I tell every family it's not an episode of Grey's Anatomy where a patient rolls into the hospital and they have a recipient ready and waiting,” Meaghan said. “It takes time to find a potential recipient who their loved ones can help.”

Zeynah had a rare blood type making it more difficult to find a match for her organs, but Meaghan stayed by the family’s side for the entire journey, Maryam said.

“It was a blessing to have somebody who wanted to get to know our child and listen to all her stories. She laughed with us and cried with us and hugged us,” Maryam shared. “Meaghan was amazing.”

In the end, Zeynah was able to donate seven organs: both kidneys, her liver, pancreas, eyes and her heart.

Wraparound support at LHSC

Meaghan’s support continued right through to the day Zeynah made her incredible donation.

“She wasn't supposed to be working, but Meaghan made sure she came in and walked down to the operating room with us,” Maryam said. “Then she took over and took care of our baby girl.”

“Meaghan went above and beyond and I couldn't have asked for somebody better to be with us during that time.”

Zeynah’s family also expressed deep gratitude for other Team LHSC members, including the Paediatric Family Resource Centre, the social work team and Child Life Specialists, who explained the difficult situation to Zeynah’s sister and cousins in ways they could understand.

How Zeynah lives on

As they continue to grieve, Zeynah’s family is comforted by the fact that her donation allows her spirit to live on in others. Her eyes will see parts of the world she didn’t have a chance to and most importantly, her generous heart still beats, helping someone else on their own journey.  

Her heart that cared for so many was ultimately matched with a 10-year-old girl, the age Zeynah would have turned just two months later.

“I think it was divine her heart went to a 10-year-old and so in this really weird way, Zeynah gets to live on in chronological order. She gets to be 10 and 11 and 12,” Maryam said.  

“It felt like it was meant to be.”

When asked what she’d say to others considering organ donation, Maryam suggested thinking about the impact this type of gift can have.  

“Zeynah’s legacy is now a part of five, six or seven other people, and hopefully those people will go on to do great things,” Maryam said. “When you think about the ripple effect in life and the decisions you make, it's so much bigger than us.”

“If you are ever in that position, think about how this decision could affect future generations.”

Just one organ donor can save up to eight lives, but at any given time there are more than 1,500 people in Ontario waiting for a life-saving organ transplant. During April’s Be A Donor month, Ontarians ages 16-and-over are encouraged to discuss organ donation wishes with family members and to register consent through the Service Ontario 'Be A Donor' website.