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Emerson’s Journey

By Alexandra Marcy

Emerson’s journey through her feeding challenges has been a testament to resilience and unwavering determination. From the earliest moments of her life, it was evident that her path would be fraught with obstacles that defied easy solutions. Born into a world where the act of nourishment, so fundamental to survival, became an elusive goal, Emerson and her family embarked on a tumultuous odyssey marked by relentless struggles and profound moments of hope.

The seeds of Emerson’s feeding difficulties were sown in the tender moments following her birth. I sensed that something was amiss when Emerson failed to latch properly during breastfeeding. Despite reassurances from hospital staff that nursing would eventually come naturally, Emerson being my third child; my maternal instincts rang alarm bells that could not be ignored. It wasn’t long before Emerson’s empty diapers echoed the silent cries of a baby unable to feed adequately.

A glimmer of insight came from an unexpected source—a doula friend who suggested that Emerson might have a tongue tie, a condition that impeded her ability to latch. However, the discovery of not just a tongue tie but also a lip tie and a buccal tie—a trifecta of hindrances—painted a more intricate picture of Emerson’s feeding challenges. A laser procedure to address these issues marked the beginning of Emerson’s journey into the labyrinth of pediatric feeding disorders.

For me, the early days of motherhood unfolded against a backdrop of perpetual worry and frustration. Despite her best efforts, Emerson struggled to obtain nourishment, leaving me to navigate the corridors of medical consultations and interventions. The adoption of a nipple shield and the transition to pumping milk offered temporary reprieves, but the specter of inadequate nutrition loomed large over our lives.

Emerson’s feeding difficulties soon manifested in alarming ways. She sounded congested, her breaths labored—a troubling sight for us. Yet, my concerns were met with reassurances from pediatricians who dismissed Emerson’s symptoms as benign. It was a narrative that would persist—a chorus of well-meaning voices downplaying the severity of Emerson’s condition, obscuring the reality of her struggles.

The turning point came when Emerson’s fragile health reached a critical juncture. At three months old, her breathing became increasingly erratic, her demeanor listless—a stark departure from the vitality one expects in infancy. A series of medical examinations yielded inconclusive results, leaving me grappling with uncertainty and fear. It was only through my own perseverance, coupled with the expertise of a feeding therapist from my professional network, that the pieces of the puzzle began to fall into place.

A retrospective review of Emerson’s X-rays revealed ominous shadows—a silent harbinger of the challenges that lay ahead. A subsequent diagnosis of aspiration—a condition wherein food enters the lungs instead of the stomach—cast a pall over Emerson’s already fragile health. It was a revelation that sent shockwaves through the our family—a stark reminder of the precariousness of Emerson’s existence.

The journey took an unexpected turn with the introduction of an NG tube—a lifeline that offered a glimmer of hope amidst the darkness. Yet, the road to recovery was fraught with setbacks and challenges. Emerson’s weak tracheal and bronchial tubes, coupled with a diagnosis of dysphagia—a difficulty in swallowing—further complicated her feeding regimen, turning each meal into a battleground fraught with uncertainty and fear.

As Emerson’s medical complexities mounted, so too did the burden on my shoulders. The constant juggling of appointments, the relentless pursuit of answers, the unyielding weight of maternal responsibility—it was a heavy load to bear. Yet, amidst the chaos, there were moments of profound connection—a shared glance of understanding, a tender embrace that transcended words—a testament to the enduring bond between mother and child.

The insertion of a G-tube heralded a new chapter in Emerson’s journey—a chapter marked by both relief and resignation. While it offered a reprieve from the physical toll of feeding challenges, it also served as a stark reminder of the limitations imposed by Emerson’s condition. Yet, amidst the uncertainty, there were glimmers of hope—a tentative step towards normalcy, a flicker of optimism amidst the darkness. However, by the age of three, her progress reversed. She began rejecting most of the food we had offered, only agreeing to eat a limited selection of four items. Even after undergoing a three-week intensive feeding therapy program at PCH, Emerson’s improvement was minimal. At that juncture, all her medical concerns had been thoroughly addressed and resolved.

The medical team at the hospital recommended that Emerson consult a psychologist, who suspected she might be suffering from Avoidant/Restrictive Food Intake Disorder (ARFID). Eventually, Emerson received diagnoses of both ARFID and Obsessive-Compulsive Disorder (OCD), despite being relatively young for such psychological conditions, as confirmed by both a child psychologist and a child psychiatrist.

To address the trauma she had experienced as an infant and toddler, Emerson underwent Eye Movement Desensitization and Reprocessing (EMDR) therapy. “Whenever she eats, she’s afraid of experiencing pain, which leads to her restrictive eating habits and intrusive OCD thoughts.”

A psychiatrist, with experience treating Pediatric Feeding Disorder (PFD) and ARFID, prescribed medication to help Emerson become more receptive to trying new foods and increasing her food intake. While things have improved somewhat, Emerson’s journey is ongoing. “She simply lacks interest in food. She doesn’t exhibit signs of hunger, and I often have to remind her to eat.”

Emerson’s journey through the maze of feeding challenges has been a testament to the resilience of the human spirit—a reminder that even in the face of adversity, hope endures. For me and my family, it has been a journey marked by both triumphs and tribulations—a journey that continues to unfold with each passing day.

As Emerson’s story reminds us, the path to healing is not always linear—nor is it devoid of obstacles. Yet, amidst the darkness, there are moments of profound beauty—a shared smile, a tender embrace—a reminder that even in our darkest hour, we are never truly alone.

 

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