It's Tubie Time! Feeding Tube Awareness Week
It is Feeding Tube Awareness Week. There are nearly half a million people in the US with feeding tubes, two hundred thousand of those are children. Over 350 medical diagnosis’s in children can lead to the need for a feeding tube. Some of the more common reasons to have a feeding tube are: prematurity, failure to thrive, neurologic and neuromuscular disorders. Many children born with Trisomy 18 will need a feeding tube temporarily or permanently. Swallowing issues, energy levels, anatomical defects and respiratory difficulties are a few underlying concerns for children with Trisomy 18.
Our very own Bella Grace was born with a defect called Esophageal Atresia (esophagus does not connect to the stomach properly) and tracheoesophageal fistula (an opening between the esophagus and trachea at some point). She was initially fed by IV nutrition called TPN until she had her esophagus and trachea repaired at 7 days old via thoracotomy. After she was given an NG-tube (nasogastric tube). She was fed fortified breastmilk on a continuous feeding pump around the clock. At that time, it was not that she could not eat by mouth but that they didn't want her to for fear of aspirations due to her rapid heart rate and breathing that her heart defect caused. They also were concerned that the energy it would take her to eat would burn more calories than she was consuming, and we were trying to fatten her up in hopes of her being a candidate for heart surgery.
Bella later got her G-tube (gastrostomy tube) when she was about 5 months old while she was still inpatient from having her heart surgery. She continued to receive fortified breastmilk until she was a year old when we introduced a whole food blended diet. We blended steamed chicken breast, fresh fruits, and veggies with a concoction of grains and oils created by her dietitian. Later we switched to a ketogenic diet under the direction of her neurologist to help with seizure management.
Having a G-tube was a lifesaver for Bella. It afforded us a way to ensure she receives vital nutrition, fluids, and medication. Throughout her life we continued to work hard with speech and occupational therapies with the hope that she would one day be able to eat all her meals by mouth. She always enjoyed her tastes of food and we were perfectly content to love our "Super Tubie" just the way she was.
It is important to understand that a feeding tube is not “giving up” on a child’s ability to eat orally. For many a feeding tube is a secondary way of getting nutrition when they are unable to complete an oral meal. For others it will be a primary mode of receiving nutrition. In the end the goal is the same...to be fed.
Want to learn more about feeding tubes? Go to https://www.feedingtubeawareness.org/