From Dismissals to Answers: Our Journey to Healing Through a Life-Changing Airway Diagnosis
For six and a half years now, my family has been navigating an uphill battle—a journey filled with sleepless nights, countless ER visits, and more questions than answers. My son’s health issues began when he was just weeks old, and despite seeing specialists across multiple disciplines, no one could pinpoint the root cause of his persistent breathing issues. Time and again, we were told he would “grow out of it,” yet the problems only worsened. The search for an airway diagnosis for my child became our family’s mission.
Finally, after years of persistence and advocacy, we found answers in an unexpected place: an orthodontist who specializes in airway and myofunctional health. This turning point has given us the hope we desperately needed and a clear path toward healing. But the journey to this diagnosis—an airway diagnosis for my child—has been anything but straightforward. It’s a story of emotional, physical, and financial hardship, and it’s one that I feel compelled to share for others walking a similar road.
The emotional toll on my family has been an absolute roller coaster. I have spent so many nights crying, up at night googling things, looking for new providers, and feeling frustrated with the lack of care and constant dismissal. This journey has been especially traumatic for my child, who is now terrified of going to the doctor, unable to handle even routine visits without tears and fear. For my other child, it has been emotionally challenging as well, as they’ve become understandably needy, feeling the focus is never on them.
As a parent, the physical toll has been astronomical. Stress has led me to gain over 50 pounds, suffer from hair loss, and live in a state of constant exhaustion from being in fight-or-flight mode, barely sleeping while listening to ensure my child can breathe. Financially, the ER visits, medications, and specialist appointments have been crippling, even with health insurance. This search for an airway diagnosis for my child has tested every aspect of our lives.
Initially, I hoped this would be something our pediatrician could figure out, but as the situation grew more complex, it became apparent that this was unlike anything we’d ever encountered. It feels as though our journey could be a case study to help other families. We first came across this orthodontist through a referral from our pediatric dentist, who had performed our child’s lip and tongue tie procedure. They evaluated our older child and referred us to the orthodontist for help expanding her jaw, which ultimately led us to answers for our younger child.
The Beginning of the Journey
Early Signs and Initial Treatments
At just 9 weeks old, my child was snoring loudly and clearly struggling to breathe through their nose, which is critical for infants who are supposed to be nasal breathers. It was worse when lying on their back, so my spouse and I took turns holding them upright through the night. By four months, we were given our first nebulizer, and the challenges snowballed from there.
We weren’t aware of a lip and tongue tie with our first child, but we recognized the signs with our second. Breastfeeding was nearly impossible, with latch issues and projectile vomiting after feeding. By six months, they couldn’t swallow properly or tolerate pureed foods without choking. The adenoidectomy, performed during ear tube surgery, was a decision made on the spot by the ENT, who noted their adenoids were hugely swollen. While we hoped it would bring relief, the issues persisted.
Searching for Answers
Navigating the Medical Maze
Despite seeing numerous specialists, including ENTs, pulmonologists, and allergists, we struggled to find consistent care. Each doctor focused solely on their specialty, leaving us to piece together the full story. We advocated tirelessly, switching ENTs and pulmonologists multiple times to find someone who would listen. However, treatments were reactionary, never addressing the root cause.
We pushed for a sleep study at age three, but the results were inconclusive. During a 2024 annual checkup, I voiced my concerns again to our pediatrician, who ordered another sleep study. After a six-month wait, the study confirmed obstructive sleep apnea in both of our children. While the specialist recommended seeing an ENT for tonsil removal, my instincts led me to return to the orthodontist, who had helped our oldest child.
The Turning Point and Path Toward Healing
Comprehensive Diagnosis and a Clear Plan Forward
The orthodontist’s approach was unlike anything we had experienced. They conducted a series of thorough evaluations, including posture analysis, cranial x-rays, and breathing assessments. The results were both shocking and validating: significant airway restrictions, a completely blocked nostril from a deviated septum, and cranial and jaw development issues that had been overlooked for years. These findings explained why my child’s airways swelled shut so easily during illnesses and why treatments up until now had only provided temporary relief.
The proposed treatment plan was extensive but gave us hope for a long-term solution. Over the course of 33 months, the orthodontist will use expanders and brackets to widen the upper and lower jaw, aligning the neck and chin to improve airway function. By addressing the structural issues in the skull and jaw, the nasal passageways will naturally open, alleviating many of the symptoms that have plagued my child since infancy. The orthodontist emphasized that this approach targets the root cause rather than just managing symptoms.
What stood out to me most was the collaborative approach. The orthodontist acknowledged the potential need for myofunctional therapy and ENT intervention for the deviated septum later in the process, ensuring a comprehensive plan. They also validated the connection between my child’s sensory processing and feeding issues and the airway challenges, giving us a roadmap for parallel treatments with occupational therapy.
This plan represents a turning point for our family. We finally have answers and a path forward that feels proactive and transformative. While the financial burden is significant, we’re fortunate that many of the treatments qualify for health insurance coverage, easing some of the strain. Most importantly, this plan offers the possibility of a better quality of life for my child—one free of constant steroids, inhalers, and ER visits.
Emotionally, this diagnosis brings a mix of relief and anger. I’m relieved to finally have answers but frustrated that it took so long and so many specialists to get here. If only someone had performed an x-ray earlier, we might have spared my child years of suffering. Despite this, I’m hopeful and determined to see this treatment through, knowing it will improve not just my child’s sleep and health but our family’s overall well-being.
Reflections on Advocacy
Lessons on Parenting and Advocacy from Our Journey
Advocacy has been the cornerstone of navigating this journey. If there is one thing I have learned, it is to trust your instincts as a parent. If something doesn’t feel right, it probably isn’t. My advice to other parents is to never stop pushing for answers and to keep searching for providers who will truly listen. Switching doctors, gathering second and third opinions, and piecing together the full story have been exhausting but critical steps.
Looking back, I wish I had brought my child to the orthodontist earlier. When my older child needed an expander for sleep apnea, I saw progress immediately, but I didn’t consider that similar structural issues could be affecting my younger child. That delay is one of my biggest regrets, but it has taught me a valuable lesson: early intervention is key.
Parenting a child with complex health needs has also reshaped how I view my role as a mother. I’ve learned that no one knows my child better than I do—not even the specialists. While doctors bring valuable expertise, it’s my observations, persistence, and unwavering determination that have made the biggest difference. This journey has reinforced the idea that parents are the ultimate advocates for their children.
Advocacy doesn’t just mean speaking up in a doctor’s office. It means taking the time to research, connect the dots between different specialists, and ensure that your child’s needs are being met holistically. It also means finding the balance between advocating for one child and ensuring your other children feel supported and loved. For my family, this balance has been challenging but necessary.
Most importantly, advocacy is about persistence. It’s about refusing to accept dismissal and continuing to fight for the care your child deserves, even when the road feels impossibly long. This journey has proven that persistence pays off, and while the fight has been exhausting, the results are worth every effort.
Journey Forward
How we hope to continue to support other #momboss mamas and families
This diagnosis has been life-changing, proving that persistence is essential in navigating a complex healthcare system. I hope our story inspires other parents to keep fighting for answers and to seek out providers who will listen.
If you’re going through something similar, reach out to me—sometimes, a personal conversation can make all the difference.
Follow me on Instagram or Facebook at @markitiwithans and join my Facebook community for updates and support. I plan to share progress throughout our journey, starting with the treatment next month.
If you are just getting started on your feeding and breathing journey with your little, don’t forget you can take my FREE Quiz. It will just take 3 minutes.
