The Shaw Family’s Journey with Asthma: A Fighting for Every Breath

The Shaw family’s story is a powerful example of how persistence and advocacy can make all the difference in managing asthma and ensuring a child’s health needs are met.

Kaitlin and Peter Shaw from New Brunswick, has navigated the complexities of asthma management with their two children, Henry (8) and Jordan (6). Their experience highlights the challenges faced by many families dealing with asthma across Canada, especially in young children, and emphasizes the importance of early intervention, expert care, and ongoing advocacy.

Henry’s Struggles with Asthma

When Henry, the Shaw family’s firstborn, was an infant, his parents began noticing troubling signs. Constant coughing, wheezing, and respiratory issues prompted frequent visits to the clinic and emergency room. Despite receiving a reliever/rescue inhaler, his condition seemed to worsen rather than improve.

“At first, it felt like nothing was being done,” Kaitlin recalls. “We were just given reliever medication over and over, but it wasn’t addressing the underlying inflammation.” The family struggled with the lack of long-term solutions and was often left feeling like they were putting “band-aids” on the issue without ever solving it.

Finally, Henry was referred to a paediatrician who, while cautious about diagnosing asthma in such a young child, agreed to begin treating Henry with an inhaled corticosteroid for it. This marked a pivotal moment in his treatment. “We were so relieved to have a more comprehensive treatment plan,” says Kaitlin. “It wasn’t just about managing the symptoms anymore; it was about treating the root cause.”  The Shaw’s experience with Henry marked the beginning of an ongoing journey in understanding asthma, one that would soon expand to include Henry’s younger sister, Jordan.

Jordan’s Early Struggles and the Aftermath of RSV

When Jordan was just two months old, she contracted RSV (respiratory syncytial virus) from her older brother Henry. Jordan’s condition was so severe that she was hospitalized for a week and placed on oxygen. The aftermath of that illness would shape her health for years to come.

From the age of two months, Jordan began showing signs of respiratory issues similar to Henry’s but with more severity. It would later be revealed that Jordan was living with severe asthma, a type of asthma that’s hard to control, even with high doses of medicine. Wheezing, coughing, and repeated bouts of pneumonia became part of her routine. Her parents found themselves on a constant cycle of trips to the ER, with no real answers about what was causing her symptoms.

Doctors initially treated Jordan for asthma, but her condition seemed to defy standard treatments. At one point, she was placed on high doses of both a reliever/recue and controller inhaler, and even used a nebulizer three times a day, but the wheezing persisted.

“It was heart-wrenching to see her struggle,” Kaitlin says. “We were doing everything we could, but it felt like nothing was working.”

Jordan’s case was labeled as a “happy wheezer”—a term that suggests some children simply experience wheezing without it being linked to a more serious condition. However, the Shaw family knew something more was going on.

“We knew it wasn’t normal,” says Peter. “She would be gasping for air, like she had just run a marathon.”

It wasn’t until 2022, after two hospitalizations, that Jordan was referred to a respirologist in Nova Scotia as there were no respirologists in New Brunswick. The respirologist conducted a thorough examination, including a CAT scan, which suggested scarring in Jordan’s lungs. The doctors believed this was a result of the severe RSV infection she had as a baby.

“RSV can sometimes lead to long-term respiratory issues,” explains Kaitlin. “It was a relief to finally have a clear diagnosis and a treatment plan that seemed to be working.”

Kaitlin recalls a terrifying night alone with her children while Peter was out of the country, “I had taken Jordan to urgent care that day because of her asthma. They nearly admitted her but decided against it, saying hospitalization can be traumatic for kids. So, they sent us home. That entire night, I sat by her side, watching her oxygen levels dip dangerously low. Something felt wrong. The next morning, I called our asthma clinic, desperate for advice. They told me, ‘Get her to the hospital.’

I rushed to drop off my son and carried Jordan into the ER. By the time we got through the door, she was coughing uncontrollably, unable to catch her breath. We skipped triage—they took her straight to the back and began treating her in the hallway. She was only four, and it was RSV again. People think RSV is just a concern for babies, but even as a preschooler, she was hospitalized for days on oxygen. It was absolutely terrifying—I never want to reach that point again.”

Jordan’s Current Treatment for Severe Asthma

After years of trial and error with medications, Jordan is finally on a treatment that has significantly improved her quality of life. A new inhaler, which is not yet approved for children in Canada, has been working wonders for her. “I can’t even describe how much better she is now,” Kaitlin says, “She’s playing hockey, swimming, and doing all the things she loves without feeling like she’s suffocating.”

Jordan’s improvement has been a huge relief for the Shaw family. However, the journey to get to this point has not been easy. For years, they advocated for better care and pushed for referrals to specialists. Kaitlin emphasizes the importance of speaking up when something doesn’t feel right.

“It’s crazy how much you have to advocate for your kids, especially when it comes to something as serious as asthma,” she says. “If we hadn’t pushed for referrals and second opinions, I don’t know where we’d be.”

Henry’s Journey

Henry’s journey with asthma has been less severe than Jordan’s, but no less important. After his pediatrician discharged him around the age of 2, his asthma care became more disjointed. The family doctor didn’t specialize in asthma and, at one point, even stopped prescribing Henry’s inhalers because he was doing well.

“But we knew something wasn’t right,” Kaitlin says. “He was coughing at night, struggling during gym class, and just wasn’t himself.”

Eventually, they pushed for a referral to an asthma clinic, where Henry underwent a pulmonary function test that showed significant improvement with the use of inhalers. “We finally got him the care he needed,” Kaitlin reflects.

The Mental Strain of Asthma Care

For Kaitlin and Peter, managing their children’s asthma is a full-time job. In addition to keeping track of medications, appointments, and emergency plans, they have to constantly educate those around them—family members, teachers, and even friends—about the severity of their children’s conditions.

Peter describes the experience as mentally straining: “It’s not just about the physical care, but the constant vigilance. You have to be prepared for anything, and sometimes, you feel like you’re alone in it.”

Kaitlin agrees, noting that the hardest part is when others don’t fully understand the gravity of asthma. “It’s not something that just goes away,” she says. “It’s a constant battle. And every time Jordan has an asthma attack, it feels like I’m reliving the past years of struggle.”

The Importance of a Supportive Healthcare Team

Throughout their journey, the Shaw family has been incredibly fortunate to have a supportive pediatrician. The doctor who has been overseeing Jordan’s asthma care, and is now connected to Henry, has been a lifeline for the family.

“This pediatrician is a true superhero,” Kaitlin says. “She’s been the one to listen, to push for the right tests, and to make sure our kids are getting the best possible care.”

Her advocacy and attention to detail have made all the difference for the Shaw family. “It’s like having someone in your corner who truly cares about your child’s health,” Peter adds.

Some Final Thoughts

Kaitlin and Peter’s story serves as a powerful reminder of the importance of early diagnosis, ongoing treatment, and constant advocacy. As parents, they have gone above and beyond to ensure their children’s asthma is properly managed, and their efforts have paid off. But it hasn’t been without challenges.

For parents facing similar struggles, Kaitlin offers one piece of advice: “Don’t be afraid to speak up. If you know something isn’t right, keep pushing for the care your child needs. Your child’s health is worth it.”

Their journey continues, but with hope for the future. Thanks to persistence, support from medical professionals, and a lot of hard work, the Shaw family is finally breathing easier.

If you have questions on managing your asthma and allergies during wildfire season, please contact our free HelpLine at 1-866-787-4050 or info@asthma.ca. Our team of asthma and allergy experts will happily assist you with your asthma control and help put your mind at ease.