February 5, 2025

Josef’s Feeding Tube Journey

Josef and family posing for a photo with santa

At just 8 years old, Josef has already faced more medical challenges than most will in a lifetime. Born with Oesophageal Atresia/Tracheoesophageal Fistula, his oesophagus did not connect to his stomach at birth. Instead, it formed a blind pouch with an abnormal connection to his lungs. Over the course of 8 months and 5 major surgeries, doctors worked to correct this complex condition and connect his oesophagus properly. 

While these life-saving interventions allowed Josef to grow and develop, they also left lasting impacts. Scar tissue and nerve damage along his digestive tract made eating by mouth unsafe, leading to the need for a feeding tube and tracheostomy. Despite these medical complexities, “Josef is a super happy kid, who for the most part does not mind and even embraces his differences,” says his mum, Rebecca.

Navigating Tube Feeding: A Lifelong Journey

Josef standing on a tree trunk

Josef’s journey with tube feeding began immediately after birth. Now at eight years old, he still relies on his feeding tube for at least 50% of his daily intake when he is healthy. Learning to drink has been a gradual process, but because of the risks of aspiration, he must be cautious.

Recently, Josef underwent another major surgery to reverse his semi gastric-pullup. This procedure provided better access to his stomach via a PEG tube and allowed for stomach stretching, enabling him to tolerate larger feeds as he continues to grow. During the day, he receives nutrition through his PEG, while his PEJ tube is used for overnight feeding, ensuring he gets the nutrients he needs to thrive.

The Impact of In-Home Support

For Josef and his family, in-home support has been life-changing. It provides much-needed respite, allowing his parents to take care of daily tasks; “Home support has made a huge difference to our family, allowing us to have some respite. We can go shopping or do household chores, knowing our son is in safe hands,” Rebecca shares. 

Jose and his brother holding hands

Beyond the practical support, in-home care has also made it possible for Josef to experience the joys of childhood. With the confidence that his medical needs are being met, his family has been able to take Josef to amazing places like AQWA, the Zoo, Animal Farms, and SciTech, all while feeling safe and able to enjoy the day with our son without worrying,” Rebecca says. These experiences have enriched Josef’s life, ensuring he doesn’t just receive care but also gets to explore, learn, and enjoy the world around him.

Embracing Every Milestone

Josef’s journey is a testament to resilience, medical advancements, and the power of community support. While his tube feeding remains an essential part of his daily life, it has never defined who he is. With a strong support system and an unstoppable spirit, Josef continues to grow, explore, and embrace life on his own terms.

At Hannah’s House, we are proud to support children like Josef and their families, providing the care and resources they need to live life to the fullest.