Finding Answers – Isabelle Moss talks about living with an immune deficiency and what CHEO means to her family.
Heather MacMurdo is sitting in her living room next to a plate of homemade chocolate chip cookies and draws her long auburn hair behind her ear. She’s 13 – with sparkling blue eyes. Smiling wide, she’s chatting about how much she loves her teachers and her new school. Someday she hopes to be a writer. She’s an avid baker and loves crafts, but also likes hanging out at the mall with her friends. Her favourite drink: Starbucks’ Cotton Candy Frappuccino.
The MacMurdo household is bustling! Jen and Jason have four children: Scott, 14, the household sports authority, then Heather, followed by 10 year old Abby their tiny dancer and seven year old Jack, the family comedian. They are all redheads – including their pets: Buddy, a four-year-old Lab, Kevin the cat and Dory, an orange beta fish!
Jen is seated next to Heather, beaming. She’s proud of her daughter, absolutely, but she’s smiling because she’s grateful that Heather is here, in this moment, a bubbly teenager. This and all other moments big and small made possible by a lifetime of care at CHEO.
At just 10 days old, Heather had her first of six open heart surgeries to date including four valve repairs and two emergency surgeries back-to-back. She has challenged the CHEO cardiology team, especially her surgeon, Dr. Gyaandeo Maharajh. Heather knows her story – but doesn’t recall the pain, or just how sick she was that December when she was four. What she does remember is Dr. Maharajh always making her smile – and Tara, the nurse who was always so kind. She remembers Molly Penny, CHEO’s therapeutic clown and watching Disney movies with her mom in her room while recovering in isolation.
Jen, however, remembers it all – vividly. She recalls anxiously waiting for word of how Heather fared with each surgery, putting her faith in Dr. Maharajh and the heart and lung bypass machine that would keep Heather alive during those surgeries when her heart had to be stopped. “I can’t let my mind go there… late at night,” she says quietly. “He saved her life! How do you thank a man who has literally held your daughter’s heart in his hands?”
Memories also flood back of that fateful December 2009. Heather’s most threatening moment came in the form of a sinister strep infection that undid the cardiology team’s latest miracle. Septic shock caused Heather’s new valve to fail. Jen can still hear the team in the Pediatric Intensive Care Unit (PICU) telling her and Jason their daughter might not make it through the night. Jen was pregnant, taking up residence at her daughter’s bedside while Jason held down the fort at home with help from family. Their greatest gift that year was Heather going home on Christmas Day.
Despite everything she’s been through – Heather still goes to CHEO with a smile. There is a comprehensive annual visit complete with ultrasound, echocardiogram and EKG. “We never take that appointment for granted,” Jen says, exhaling. “Every time we get to walk out the door is a blessing. Heather has managed to avoid many of the challenges cardiac kids have due to medications and anaesthesia. We’re amazed at what she’s capable of!”
Recently, Heather was tasked with creating a timeline of her life – featuring 10 items. She struggled – noting the birth of her brother and the day Buddy joined the family. Her surgeries didn’t make the list. “I told her it might be worth mentioning,” laughs Jen. “But it’s not something that she feels defines her.”
Somewhere in the future, Heather’s timeline will be punctuated with another surgery. No one knows when. But, the one thing she and her family can totally agree on – is that at CHEO, her heart couldn’t be in better hands.
James Gill came into the world far too early, 128 days early, with a wailing battle cry as powerful as his one pound, six ounce, 12-and-a-half inch body could muster.
He shocked everyone, especially the doctors who had never seen a baby born after only 22 weeks in the womb survive. That’s because it was 30 years ago: May 20, 1987. That day, James became the world’s most premature baby. It appears in the 1989 Guinness Book of World Records. James has the book, and a collection of impossibly tiny bonnets and booties his mother saved from his days in the Neonatal Intensive Care Unit. They look like doll clothes.
His father Jim raced behind the ambulance carrying his mother Brenda from their home town of Brockville to the Civic Hospital in Ottawa. Doctors there determined she was in premature labour. The medical team greeted them with grim news: their baby would not survive. James proved them wrong.
Most parents wistfully imagine their baby’s development with the help of grainy ultrasound images and a growing baby bump. Jim and Brenda watched James develop through the window of his incubator. His ears, hands and feet were not fully formed; his eyes were fused shut. James’ parents advocated for him while the medical team went into uncharted territory. The team came up with creative solutions to care for James. A catheter bag filled with saline created a tiny water-bed to gently cradle his soft, still-developing skull. His skin was so delicate it would tear with the removal of the gentlest medical tape; calls were made to other hospitals to get advice on how to protect it and promote healing.
Incredibly, James suffered no lingering effects from his early arrival. Many premature babies grow up with developmental delays, breathing difficulties, impaired vision and hearing.
“I owe my life to them,” James says simply. “My parents especially and the doctors, nurses and staff all fought to save me…,” his voice trails off. “CHEO is such a wonderful place for both parents and kids.”
James also needed heart surgery. During his 128 days in hospital, world renowned cardiac surgeon Dr. Wilbert Keon performed the procedure to close one of his tiny heart valves. At the time of the surgery James weighed just one pound.
The Gills took their baby boy home on his due date: September 25, 1987. James and his family appeared on the CHEO Telethon a few times with long time CHEO advocate and family friend Max Keeping. “Max was a great guy. He had a very personal connection to our family my whole life. He arranged for me to be taken home from the hospital in a limousine,” James recalls, smiling. Max stayed in contact with the Gills, even visiting James’ mother in hospital when she was fighting cancer. He spoke at Brenda’s funeral service when she passed away in 2006.
James is making good use of the life he fought so hard for. He is grateful for his tight-knit family and a career in the automotive industry, recently joining Barrhaven Mazda as Service Manager. His message is simple. “I’m here – and I may not know yet why, but I’m fortunate for everything that’s happened in my life. If anything, maybe I can offer hope to families going through the same thing. I’m living proof. My parents and CHEO helped me beat the odds!”
At CHEO, child life specialists help children and their families work through difficult situations emotionally and psychologically. In all areas of the hospital they support families navigating a vast array of circumstances, from a terrified toddler about to experience his first needle, to an inconsolable mom whose child is in surgery.
CHEO has one of the busiest Emergency Departments in the country, and it is where Child Life Specialist Lisa O’Kane has worked for 13 years. After a brief conversation with Lisa, it becomes obvious that her passion for helping children and families runs deep, a trait instilled by her parents. That passion, combined with her ability to read people and assess situations makes her a perfect fit in CHEO’s Emergency Department. “The Emergency Department is unlike other hospital units,” says Lisa. “I love the unpredictability. My heart races when I start my shift because you never know what kind of a day it’s going to be. It could be a day filled with trauma cases or a day of broken bones and lacerations.”
The fact that there is no such thing as a “slow day” in the Emergency Department is part of what motivates Lisa. A constantly busy waiting room means she is always scanning for the child or family that needs some help. “The reality of the Emergency Department is that nobody wants to be here,” Lisa explains. “They are here because they are worried about their child and it is usually their worst day. Sometimes the smallest things I do can go a long way. For example, if a mom is in the waiting room with a crying child and they have been there for an hour, have seen other patients going ahead of them and are thinking they have been forgotten, you can feel their anxiety. I will sit beside them and say things like: this must be hard for you, what can I do to help you? Have you eaten? Do you need a blanket for your child? Suddenly after some simple conversation mom is breathing a little easier, and feels better about the situation.”
It is often the child that needs the most attention and Lisa has learned plenty of tricks over the years to help calm a frightened little one. “Let’s say I have a four year old boy who needs an IV for pain medication. I will use the doll in my teaching kit and show him what is going to happen,” explains Lisa. “Then when the nurse comes in with the IV cart, the child will recognise everything and there will be no surprises. They will say things like, ‘there’s the blue band they’re going to use,’ and ‘I’m going to get a squeeze on my arm.’ By having the child take part and making them feel empowered you can take them from being scared to doing high fives after the IV is in.”
Child life specialists help patients cope with fear, anxiety, separation and adjustment to the hospital experience. In the Emergency Department that means reduced pain, less sedation, shorter procedures and kids and families going home sooner. Lisa does everything she can to make those things happen and is thankful for donor support. “I think we are very privileged to have a hospital like this,” says Lisa. “As a mom, all three of my children have needed CHEO and I feel we are so lucky to have this incredible hospital. Thank you. With your continued support child life specialists will always be here to support CHEO patients and the doctors and nurses who care for them.”
A GIRL WITH GOALS
Isla MacIntosh is so much fun to get to know. She’s energetic, enthusiastic, kind and vibrant. Like a lot of wonderful young people in our community she has dreams for the future and a varied list of sports she likes to play and things she’s excited to be learning in school. But unlike many of her peers Isla’s had challenges to face. Continue reading
Each year, CHEO identifies a remarkable child to represent all CHEO patients in the Children’s Miracle Network Champions program presented by Walmart Canada. This awareness program was designed to educate communities on the life-saving work being done by pediatric hospitals across the continent. Jacob Randell has been a CHEO patient since being diagnosed with atypical teratoid rhabdoid tumour at the age of five. Continue reading