UPDATE: June’s Tube-Feeding Support Group will be held Thursday, June 30, 2016 at 6:30 pm at Primary Children’s Hospital on the 3rd floor in Classroom D & E.
I’m excited to share the only tube feeding support group that I’ve ever of heard of in Utah in my 15 years as an occupational therapist treating children with feeding difficulties! I’ve worked with many families whose children cannot eat enough by mouth and have no other option than to place a feeding tube so their child can get the nutrition they need. Sometimes this lasts only a few weeks, but many children require tubes for many years to even life. Feeding tubes are a wonderful medical advancement that have saved millions of lives, but I have always been acutely aware of the emotional bombshell for every family when a feeding tube is considered, placed and then sent home to become their own child’s tube feeding expert. This group will be a great resource to help families affected with this overwhelming process.
Our community has many great families with wonderful knowledge and perspective that are willing to share with others in the same situation. For healthcare professionals, it is an almost impossible task in our current healthcare environment of privacy, time and budget constraints to logistically coordinate connecting parents who can support each other. I’m thrilled we have great parent advocates in our community willing to launch this support group!
This tube feeding support group will be run by parents of children with feeding tubes. Garrett is the parent support group leader and father of a daughter with a feeding tube. He has been a tenacious advocate for his own daughter, Lucy, and has extended that tenacity to the larger community of families who have children with feeding concerns. Garrett has also been involved with Feeding Matters, an advocacy organization for children with feeding struggles. Lucy has struggled with eating by mouth since she started eating solid foods as an infant and currently has a G-tube for her nutritional intake.
If you are interested in learning about Lucy’s feeding story, here is a link to a short video: Meet Lucy.
Topics will initially range from navigating the insurance system, to finding and sharing feeding resources, to effectively collaborating with healthcare professionals (doctors, feeding therapists, dieticians, etc.) for the benefit of children with or who are in the process of the placement of a feeding tube. This support group is primarily for families to share and seek support without the pressures of healthcare professionals’ judgment that may be present in other settings.
The second meeting will be Thursday, March 31, 2016 at 6:30 pm at Primary Children’s Hospital on the 3rd floor in Classroom D & E. They are currently planning to meet once a month.
Garrett has graciously provided his phone number if you have questions. He can be reached at 801-554-0184.
If you know of other community resources in Utah for children with feeding difficulties, please share!