Henley’s Story: Feeding Tube Awareness Week- February 2-8

Feeding Tube Awareness Week, observed from February 2 to 8 this year, aims to increase the understanding of feeding tubes and their critical role in supporting the health and well-being of children with medical complexities. The week promotes best practices, innovations and the lived experiences of families who rely on tube feeding.

Founded in 2011, this initiative has grown into a nationwide movement, with SickKids Hospital launching the first Feeding Tube Awareness Week in Canada in 2020. This global observance, held annually in the first week of February, highlights the life-saving impact of feeding tubes and helps challenge the stigma surrounding them. Families come together each year to share stories and raise awareness of their positive influence on patients’ lives.

Henley’s story

Henley lives with his parents, Josh and Laura, and their two dogs, Riley and Zoe. At seven months of age, Henley was diagnosed with Kabuki syndrome, a rare genetic disorder that affects multiple parts of the body. In Henley’s case, his diagnosis primarily affects his feeding abilities and hips. The first sign that hinted at something being amiss began when he was not feeding well nor gaining weight. When he was two months old, he received a failure to thrive diagnosis and required life-saving intervention through the insertion of a Nastrogastic (NG) Tube which was five months later replaced with a Gastrostomy Tube (G-Tube). 

Josh and Laura’s journey started before Henley’s conception as he was a surrogate baby conceived through an egg donor. Henley was a baby that the family truly desired and waited for patiently. Therefore, despite doing everything they could with prenatal genetic testing through the fertility clinic, his genetic disorder was a shock.  

Laura, also a professional Registered Nurse, admits that the decision to insert a G-Tube was harder to accept than the actual Kabuki syndrome diagnosis itself. “Overall, it was a lot to process, but with the G-Tube, as a mom and nurse, it seemed so permanent. We tried to avoid it but when looking at the pros and cons, and the thought of not nourishing your child at all, the G-Tube made the most sense,” says Laura. The acceptance piece took time but after processing everything, it was the best decision for Henley and the whole family as it allowed him to get to where he is now.  

Henley’s parents worked closely with his nursing team to educate themselves on how to use the device correctly and to best meet Henley’s needs. Laura explains that “it was a learning curve. We had to know what medications and food/formula could be given through the G-tube, how to vent the tube (opening the tube to allow trapped gas/air to escape and massaging his belly), organize a caddy with syringes, prevent Henley from pulling the tube out and work around a new feeding schedule wherever we were. Henley had a G-Tube backpack which made it easier on the go.”  

Henley’s G-Tube journey has recently ended with the successful removal of his G-Tube. After swallowing assessments and being guided by a dietitian, his parents were able to safely introduce oral foods for him. Through a gradual wean of slowly decreasing his G-Tube feeds, he started to show signs of hunger and began eating purees and drinking water. Although they now face different challenges, he is primarily orally fed.  

Laura acknowledges that Henley’s success story may not be the same for others and feels very fortunate to have reached this point. Her advice to other parents who may be at a crossroads debating the use of a G-Tube for their child is to “look at what it can do for your child. Let your child lead the way through the journey by following their cues and trusting the medical team in the process. The harder decision is sometimes the right decision, even if at the time it is hard to accept. Educate yourself the best you can, talk to other parents with similar journeys for added support and ask questions – there are no silly questions, you need to be 100% comfortable with what you are doing. Finally, try to see the process as a positive experience knowing that [the G-Tube] is helping your child.” 

Henley is now two years old and nine months. He eats orally and his favourite foods are strawberries and cheese and crackers. Following a simple procedure in Fall 2024, Henley had his G-Tube removed and has healed well.