A Glimpse into a Brave Young Boy’s Journey with CHARGE Syndrome

Imagine a young 9-year-old boy named Alex*, who faced a unique challenge right from his birth due to a condition known as CHARGE Syndrome. In February 2023, he found hope and relief at Clear Passage, seeking treatment for his chronic Small Bowel Obstruction (SBO).

Understanding CHARGE Syndrome: A Story of Resilience

CHARGE Syndrome, though its name doesn’t entirely reflect its features, is a genetic syndrome that affects kids like Alex. The acronym once stood for Coloboma of the eye, Heart defects, Atresia of the choanae, restriction of growth and development, and Ear abnormalities and deafness. Nowadays, the name is more historical than diagnostic. CHARGE Syndrome is quite rare, affecting only about one in every 150,000 births worldwide. It’s like a puzzle of challenges, where each child’s experience is different. Unfortunately, many babies born with CHARGE Syndrome face life-threatening birth defects, often needing hospitalization and multiple surgeries. Shockingly, 70% of those diagnosed with CHARGE Syndrome don’t make it past their fifth birthday.

Navigating the Complexities: Challenges Faced by Alex

One of the significant hurdles for individuals with CHARGE Syndrome, like Alex, is gastrointestinal dysfunction. Feeding and digestion troubles become a constant struggle due to the way this syndrome affects the body. Issues with cranial nerves, especially the vagus nerve, can lead to problems in the gut’s movement. This results in a condition known as gut dysmotility. Complications from surgeries in the chest and abdominal areas can lead to adhesions, which are like internal scar tissues, causing small bowel obstructions.

Meet Alex: A Fighter with a Remarkable Spirit

Our patient, Alex, at just 9 years old, has been through so much. Deaf, blind, unable to speak, and not able to move around, he relies on a G-tube for all his nutrition, even water. His mother shares that he’s already had numerous heart and abdominal surgeries since his birth. One of these surgeries was the Ladd procedure, which aims to correct intestinal malrotation in children. This involves a series of steps, including addressing twisted intestines and arranging them correctly.

Sadly, Alex’s daily life has been filled with intense abdominal pain, causing him to curl up in agony, often screaming in pain as he lay on the floor. He struggled with frequent vomiting, and these symptoms only intensified after his first abdominal surgery at just 2 months old. Over time, the pain became more frequent and lasted longer, affecting his quality of life.

A Beacon of Hope: The Treatment Journey

Alex’s story took a hopeful turn when he underwent a specialized treatment known as the Wurn Technique. This treatment involved one-hour sessions in the morning and afternoon over ten days, with breaks on the weekends.

The Brightening of Days: A New Chapter for Alex

Two months after the treatment, in April 2023, Alex’s mother joyfully reported that her son’s life had changed significantly. No longer does he writhe on the floor in pain after being fed, and his nights have become more peaceful, with longer stretches of sleep. Overwhelmed with gratitude, she mentioned that Clear Passage had played a crucial role in giving Alex his life back.

Alex’s journey, though challenging, is a testament to the strength of the human spirit and the power of specialized care. The story serves as a reminder that every individual’s experience is unique, and with dedicated care and innovative treatments, lives can be transformed.

*Alex’s name has been changed to protect the identity of Clear Passage’s patient.

With a focus on decreasing adhesions, the Clear Passage® program is 20 hours of therapy, typically over 5 days but for special cases, such as children, it can be spread out over 10 days.

Inspired by brave journeys like Alex’s, discover how Clear Passage Physical Therapy can make a difference in your life – Request Information and schedule your Free Consultation today to learn how our specialized therapies can address complex conditions, then visit our Apply to Therapy page to take the first step towards improved health and quality of life.