The first week of February marks Feeding Tube Awareness Week, a time to bring visibility to a topic that touches many families in the Angelman syndrome community.
For caregivers, the decision to use a feeding tube can feel monumental. It comes with medical considerations, emotional weight, and countless questions about what life might look like moving forward.
People with Angelman syndrome can face feeding challenges, including difficulty coordinating sucking and swallowing, gastrointestinal issues like reflux, and risks of aspiration. Although many individuals with AS take all nutrition orally, some require additional support when oral feeding is unsafe or insufficient.
To help tell these stories, we invited caregivers in our community to share their experiences, what led them to this decision, what challenges they faced, and what they wish they had known sooner.
For many caregivers, the decision came down to one essential priority: helping their child thrive.
“Swallowing difficulties, nasal reflux, aspiration and we couldn’t keep enough nutrition going down. Even with a nasal tube, reflux was bad. Once we switched to a G-tube, reflux improved and our child started thriving.” — Kennedy B. on behalf of Sonny (11 months)
Another caregiver shared how a feeding tube wasn’t just about nutrition but also quality of life:
“We spent over 8 hours a day trying to feed him. It was painful for him to swallow. Post-tube surgery, we finally had peace of mind, proper hydration, and his medicine administration became easier.” — Laura & Andrew R. on behalf of Hudson (4 years)
For some, the tube became a safeguard during illness and growth struggles:
“We wouldn’t have made it without this! It helped Ezra grow and thrive and was also great for meds and hydration when he was sick.” — Emily S. on behalf of Ezra (5 years)
Families were candid about the realities of life with a feeding tube, both the logistical and emotional aspects.
“Having the equipment with you wherever you go is more complicated than a water bottle.” — Emily S.
“Organizing all the supplies and washing everything daily is a lot. And emotionally, accepting that our daughter needed surgery was hard.” — Roxana S. on behalf of Maya (2 years)
Even caregivers with decades of experience reflected on how complex the journey can be.
“Getting her to drink and eat without relying on tube took many years of therapy. But the tube was at times a matter of life and death.” — Roseanne D. on behalf of Gabriella (31 years)
These stories remind us that the feeding tube journey isn’t just clinical, it’s woven into the routines, travel plans, wardrobes, and emotions of daily life.
Despite the challenges, nearly every caregiver shared an unexpected outcome: relief.
“It made our life a lot easier. I don’t worry about her not eating. I have full control so she gets the right amount of fluids, medications, and vitamins.” — Roxana S.
“Even though it isn’t as convenient as regular eating, it significantly improved quality of life for both of us. It gives us peace of mind when he’s sick.” — Laura & Andrew R.
“You can tube feed and still work on oral feeding goals. Feeding tubes don’t have to be forever.” — Kennedy B.
For many families, feeding tubes didn’t replace hope… they created space for it.
Across all responses, a few themes emerged:
- You are not letting your child down. Choosing a feeding tube can be an act of love, safety, and hope.
- It doesn’t have to be permanent. Some families find a balance between tube feeding and oral skills over time.
- Quality of life matters. Peace of mind, reliable nutrition, and easier medication routines are real benefits.
- Support is key. Connecting with other caregivers, therapists, and medical teams makes the journey less isolating.
Feeding tubes are more than medical devices. For families touched by Angelman syndrome, they’re tools that can protect health, support growth, and unlock new possibilities, even when the path feels daunting. This Feeding Tube Awareness Week, we’re grateful for the caregivers who shared their experiences to support others walking a similar road.
If you or someone you care for is navigating decisions about feeding tubes, remember: every story is different, every choice is valid, and no one has to walk this path alone.
