As Abby’s grandfather and the one conducting this heartfelt interview, it’s important for me to share not just the facts but the profound impact this journey has on Abby and our family.

Abby’s ordeal with bronchiectasis commenced during what should have been a routine visit to the emergency room at her local community hospital for a mild asthma exacerbation. In a turn of events that would change our lives forever, the nurses’ refusal to fulfill their basic duties resulted in a partial lung collapse, known medically as atelectasis. This was not just a medical oversight; this was preventable which instead of helping set off a devastating chain of events, ultimately leading to the development of Abby’s lifelong bronchiectasis, a condition that would challenge her and our family in ways we never anticipated.

This interview aims to shed light on the relatable content of our journey, emphasizing the personal connections and emotional toll behind the medical facts. It is to tell you of one person who could have done so much better but made the choice not too – the nurse in Abby’s care.

As Abby’s mother, Adrienne, recounts, “Every night, between 3 am and 4:30 am, Abby wakes up with pain in her chest and she can’t breathe. It’s a routine that has become all too familiar, and it’s just the beginning of her daily battle.”

To help Abby breathe, she is on a rigorous treatment regimen of saline, Pulmicort, and Ventolin aerosols every 3 hours. “It’s a never-ending cycle of medications and treatments that Abby has to go through just to get through the day,” Adrienne says.

The shortness of breath and pain in her chest is only the tip of the iceberg when it comes to Abby’s bronchiectasis symptoms. She also experiences frequent bouts of daily pain, especially following her antibiotic treatment for her bronchiectasis.

“Abby is homeschooled now, but even just moving around the house or playing outside with her brothers can be a real struggle for her,” Adrienne says. “She has to stop and rest constantly because her chest starts to hurt, and she feels like she can’t catch her breath.”

Abby’s chest pain which she describes as a burning radiating pain that can make even simple tasks like getting dressed a challenge. “When my chest pains it feels like someone is holding my lung shut and taking a fork and stabbing the bottom of my lung. It hurts so bad. After mommy gives me my medicine in my mask it feels like someone let go of my lung and stopped stabbing it and I can breathe again!” Abby explains while holding a empty squeezable bottle and fork using them as tools demonstrating how she feels on a daily basis.

The pain in her legs, ankles and arms keep her from moving too much. “Abby’s mobility started to become a problem after taking Amoxicillin Clavulanic Acid in November 2023. The specialist wanted to rule out Protracted Bronchitis as the cause of Abby’s Lung issues.” Adrienne explained. “Instead of doing a CT scan he chose to experiment with the use of Amoxicillin Clavulanic Acid and Prednisone for a 30 – 45 day period. Within 1 hour of Abby taking the Amoxicillin Clavulanic Acid, she struggled to walk, I notified the specialist and he had never heard of it, so he dismissed the issue. Since then, Abby’s mobility has diminished day by day.”

Before Abby received her walker it was common to see her crawling like an infant on the floor because the pain of standing is just too much. It’s heartbreaking!

Fatigue is another debilitating symptom that plagues Abby on a daily basis. “Even after a good night’s sleep, Abby is always so tired,” Adrienne explains. “It’s as if her body is constantly working overtime to perform daily task, task that as a child should be effortless.

“Some days, it hurts Abby to take a deep breath,” Adrienne says. “It’s heartbreaking to see her in so much pain, and it’s hard for her to focus on anything else when she’s suffering.”

For Abby, the physical symptoms of bronchiectasis have a profound impact on her daily life – often in ways that may not be immediately visible to those around her.

“People look at Abby and think she’s ‘just fine’ because she doesn’t look sick, people think that her condition is as simple as Asthma, people don’t understand it’s not as simple as just giving her a puffer” Adrienne says. “But they don’t see how much effort it takes for her to get through the day.”

Simple activities that most children take for granted, like playing with her brothers or engaging in hobbies, can be a major challenge for Abby. “Abby used to love running around and playing with her brothers,” Adrienne recalls. “But now, she gets winded so easily and has to sit out a lot. The daily pain prevents her from playing like a normal kid. When she tries to keep up to her brothers like a normal kid, she physically pays for it that evening and the next day through excruciating physical pain, pain in her chest and shortness of breath. It breaks my heart to see her struggling to keep up.”

The fatigue, breathlessness and physical pain associated with Abby’s condition also make it difficult for her to participate in any physical activities, even within the homeschool setting. “Abby has to rest a lot during the day because she just can’t do much without feeling exhausted. It’s common for Abby to do a hour of schoolwork and then go for a nap.” Adrienne explains.

This lack of physical activity not only takes a toll on Abby’s physical health, but her mental and emotional well-being as well. “Abby feels left out a lot, and it’s hard for her to see her brothers doing all the things she used to love,” Adrienne says. “Sometimes, she just wants to stay in her room and avoid the embarrassment she feels of not being able to keep up.”

In addition to the physical challenges, the emotional burden of living with bronchiectasis can be equally, if not more, debilitating for Abby and her family.

“The constant pain and fatigue can be really isolating for Abby,” Adrienne says. “She feels like she’s missing out on so much, and it’s hard for her not to get frustrated or sad about that.”

Adrienne has witnessed the toll this condition has taken on her daughter’s mental health. “Abby used to be such a bubbly, outgoing kid,” she says. “But now, she’s much more withdrawn and anxious, especially when her brothers are playing together.”

This emotional strain can also manifest in other ways, such as increased irritability, difficulty concentrating, and even depressive episodes. “Some days, Abby just doesn’t have the energy to do anything,” Adrienne admits. “It’s hard for her to stay positive when she’s in pain and feeling so tired all the time.”

The social implications of bronchiectasis can also be significant for Abby, even in a homeschool setting. “Abby doesn’t like to talk about her condition with her friends that she had from being in school because she doesn’t want them to treat her differently,” Adrienne says. “But it’s hard for her to hide the fact that she can’t do a lot of the things they can.”

This sense of isolation and feeling “different” can have a profound impact on Abby’s self-esteem and overall well-being. “Abby used to be so confident and outgoing,” Adrienne says. “But now, she’s much more self-conscious and hesitant to engage with her friends, she constantly feels left out.”

The emotional toll of Abby’s condition extends beyond just her own well-being. The entire family has been deeply affected by the challenges of managing this chronic illness.

“As Abby’s mother, it’s heartbreaking to see her struggling with this every day,” Adrienne says. “I feel so helpless, and it’s hard not to worry about her long-term prognosis and quality of life.”

The financial burden of Abby’s care has also been a significant source of stress for Abby’s mother Adrienne. “The constant doctor visits, medications, and adaptions to our home have really taken a toll on me,” Adrienne explains. “It’s a constant balancing act to make sure Abby gets the care she needs without completely draining my resources.”

Adrienne’s trust in the Children’s Hospital has been shattered. In November 2023, Adrienne had given paperwork to the insurer of the hospital as proof of Abby’s Bronchiectasis diagnosis for the Medical negligence lawsuit pending against them. During this interaction, Adrienne had clearly forbid the insurer from contacting Abby’s specialist, Department Abby was being seen in or the Children’s Hospital for anything regarding Abby’s Health.

It appears that despite clearly instructing the insurance company not to contact the hospital, they disregarded Adrienne’s clear instructions, violated Adrienne’s parental rights and Abby’s Confidentiality and contacted Abby’s specialist anyway.

Adrienne’s intention was to seek a fair and unbiased medical opinion for Abby which is why the Children’s Hospital was not made aware of the lawsuit against the other hospital in the same health Authority. It was not to be devious; it was to ensure that Abby received the care she deserves! Care that was free of political biases.

Adrienne uncovered that certain private details about her personally were known to the specialist, these private details as information only the insurance company was aware of. Indicating a breach of confidentiality by the insurance company. It appears that a representative from the insurance company divulged information about the lawsuit to Abby’s specialist. The only reason the insurer would risk a breach to this magnitude is because it benefits them to persuade the specialist to change or downplay Abby’s diagnosis and which in turn lowers the insurers risk of losing the lawsuit.

The insurer is trying to stop Abby’s mother from obtaining the proof that is required to demonstrate the link between the Atelectasis and Mucus Plugging in 2019 that the nurse caused through medical negligence and the development and discovery of Bronchiectasis in 2023. One of the causes of non-cf Bronchiectasis is a mucus plug.

Subsequently, it appears that the specialist’s priorities have shifted, prioritizing financial and reputational interests over Abby’s well-being. As a result, Abby’s care has been compromised, much to Adrienne’s dismay.

“In light of the newest changes with her specialist and their behaviour, I am working on getting a second opinion from the Boston Children’s hospital, this opinion would not be influenced by the insurer of the Hospital that I am suing for the medical negligence Abby suffered. I do not trust the Children’s hospital is truly thinking about Abby I feel their loyalty to the insurance company and politics are getting in the way of Abby’s care and I am completely outraged!” Adrienne expressed during out interview on Friday.

During my discussion, Adrienne explained she has been off work to care for Abby during this time and finances have been very tight. Although her income has decreased, her expenses have increased. “I hate talking about finances, but I had to put my career on hold to care for my daughter. As a single mother I only have my income to rely on which has been difficult during this time. I am making it work but the stress has been a lot to handle.”

The overwhelming challenges posed by Abby’s bronchiectasis are heartbreaking, Adrienne is managing Abby’s condition the best way she can. However, the path forward has been complicated by the preventable nature of her disease.

“If it weren’t for that nurse’s mistake, Abby wouldn’t be dealing with this lifelong condition,” Adrienne says. “It’s so frustrating and heartbreaking to know that Abby was not born with this condition, and this could have been prevented, and now we’re left to pick up the pieces.”

One of the key components of Abby’s treatment plan is regular physiotherapy and airway clearance techniques. “Abby has to do chest physiotherapy every day to help loosen and clear the mucus in her lungs and take her aerosol every 3 hours. The aerosol takes 45 minutes to complete. She also takes an antibiotic 3 times a week which leaves her feeling fatigued, nauseated and worsens her pain in her muscles.” Adrienne explains.

“It’s a time-consuming process, but it’s essential for keeping her symptoms under control. Missing one aerosol means she is awake in the night with shortness of breath and chest pain. However, constant use of antibiotics come with their own set of risks and complications. The way it feels lately is I am damned if I do, damned if I don’t. There is no right answer and either way my daughter is put at risk.” Adrienne informed.

Abby’s aerosols contain saline, Pulmicort, and Ventolin, as mentioned above these aerosols given every 3 hours, to help suppress inflammation, prevent chest pain and exacerbations. “The medications help a lot, but they also come with their own set of side effects,” Adrienne says. “It’s a constant balancing act to find the right treatment plan for Abby.”

Another important aspect of managing Abby’s bronchiectasis is maintaining a healthy lifestyle. “Abby has to be really careful about getting enough rest and avoiding triggers that could worsen her symptoms,” Adrienne says. “Things like exercise, stress, and even changes in the weather can all have a big impact on her condition.”

Despite the challenges, Abby and her family remain hopeful that with the right treatment and support, she can learn to manage her condition and live a fulfilling life. “I know it’s going to be a lifelong battle, but I’m determined to not let bronchiectasis define Abby,” Adrienne says. “She deserves to be able to do all the things her brothers can do, and we’re not going to give up until we find a way to make that happen.”

For Abby and her family, the daily struggle with bronchiectasis is a silent battle that often goes unnoticed by those around them. But by raising awareness and fostering a greater understanding of this condition, they hope to not only alleviate the burden but also hold those responsible accountable for the preventable incident that led to Abby’s lifelong illness.

“I need people to understand that just because Abby doesn’t look ‘sick,’ it doesn’t mean she’s not suffering,” Adrienne says. “The pain and fatigue she experiences is very real, and it can have a profound impact on her physical, mental, and emotional well-being.”

Adrienne is determined to advocate for Abby and ensure that the healthcare system and professionals involved in her care are held accountable for the preventable incident that led to her bronchiectasis. “What happened to Abby should never have happened,” she says. “The nurses’ actions directly caused her to develop this chronic, progressive lung disease, and we’re not going to let that go unchecked.”

By advocating for more research, better treatment options, and increased support for children with bronchiectasis, our family hopes to ensure that Abby and others like her receive the care and resources they need to thrive. And by sharing Abby’s story, it is our goal to inspire others to be more compassionate, understanding, and supportive of those living with this invisible, yet debilitating, condition.

“I want people to know that bronchiectasis is not just a ‘grown-up’ disease and it’s not like asthma where you can ‘just treat it with a puffer’ it is more complicated and complex.” Adrienne says.

Abby is a brilliant little girl and I wanted to highlight a bit of what she feels and her insight into this journey. Here is what she told me word for word:

“I just want to be a kid. I am tired, I don’t feel good, and I am in pain all the time. Why did the nurse have to do this to me! Why do I have to have the bad lungs. Mommy is always tired and worried about me, and I know it’s because I am having breathing problems. Mommy is always there to help me, but she is really tired!”

The road ahead for Abby, her mother, her brothers, and us—the grandparents—is filled with uncertainty and challenges as we navigate Abby’s battle with bronchiectasis. Despite the difficulties that lie ahead, our determination to fight for Abby’s health, her future, and the justice she deserves remains unyielding.

Let me be clear: our intention in sharing our journey is not to garner sympathy or to dramatize our situation. Every word shared here is a raw reflection of our reality. We are not merely observers; we are witnesses to the injustice inflicted upon Abby. The memory of that fateful day, when my wife and I witnessed Abby’s suffering and her being airlifted to the pediatric facility, is etched into our minds with searing clarity.

Our frustration and outrage are profound. It is not nurses in general whom we condemn, but rather the one who caused Abby harm and the executives of the hospital, along with the despicable actions of the insurance company. They prioritize profit over Abby’s life, seemingly indifferent to her suffering.

Legal counsel has informed us that in a different system, justice might have been swiftly delivered. But in our reality, where public healthcare often means justice is elusive, our fight is uphill and seemingly overwhelming.

Yet, despite the odds stacked against us, we refuse to surrender. This has become our life’s mission—to shine a light on the flaws within our medical system, to advocate for change, and to ensure that what happened to Abby doesn’t happen to others.
Your support means everything to us. It is a beacon of hope in our darkest moments. If you can, please consider donating to Abby’s care. Your contribution, no matter how small, makes a difference in easing the burden on this young single mother and her family.

We are also reaching out to our friends across the border. If anyone has connections at Boston’s Children’s Hospital that could aid Abby’s treatment, please reach out to us.

To those who have read this far, thank you. Your time and attention are precious, and we are grateful for your support in sharing our message. Together, we can make a difference in Abby’s life and in the broader landscape of healthcare in Canada.

Article written by: JC

Abby’s journey is far from over, but with the collective power of compassionate hearts and helping hands, we can light her path and many others’. Join us in making a difference, one step at a time.

Together, We’re Not Just Strong; We’re Unstoppable!