Changing Colors: The Blog of Spectrum Pediatrics

September 19, 2018

Tube Free Superstar: Meet Benji

Benji was born 41 weeks with no complications during pregnancy. Due to umbilical cord asphyxiation and meconium aspiration at birth, he went to the NICU. While there, Benji showed limited interest in eating and an inability to coordinate his suck, swallow, breathe reflex.  He stayed in the NICU for 25 days and transitioned home with an NG tube due to poor weight gain and continued food refusal. While at home, Benji’s parents attempted to feed him the bottle but he continued to be inconsistent. In July 2017, Benji received a G-tube. After having his G-tube placed, Benji’s parents worked hard on his feeding schedule and relationship with the bottle. His skills improved and there were some days that Benji did not need the tube.  Unfortunately,this did not last and Benji became aware of his pump and his oral aversion grew. Although Benji would eat around 2 oz purees with meals, he would gag on any other consistency and he regressed to only being interested in the bottle while drowsy or asleep. Prior to starting the program, Benji was receiving 75% of hydration via G-tube. Due to Benji’s strong aversion to the bottle, all of his bottle feeds were done while he was falling asleep or sleeping.

Benji’s family decided to do a supported tube-wean through Spectrum Pediatrics. Benji’s journey began at 12 months old with the team at Spectrum Pediatrics in his natural home environment in New York. Benji’s pediatrician worked closely with his therapist and family throughout his tube weaning journey. During the hunger induction period, Benji’s overall volume was reduced – allowing him to feel hunger and he began to show more interest in eating.  His parents observed that he seemed more interested in eating and being spoon fed. Benji began exhibiting signal cues for acceptance such as opening his mouth or reaching for the spoon. During the transition between hunger induction and intensive treatment, Benji’s dream feeds were dropped. Although formula was offered through the bottle, as well as other cups, while awake, Benji preferred to drink milk through a straw! During the first few days of intensive treatment, Benji’s interest in various purees and finger foods such as puffs or meltable solids grew tremendously. Benji began to show interest in cups that he saw his caregivers using and would accept a few sips from an open water bottle or cup. Benji’s oral motor skills continued to improve as he began feeding himself crackers and veggie straws, however he still wouldn’t accept the bottle.

Throughout the intensive portion of the program, Benji’s oral intake continued to increase as did his comfort with spoon feeding. Benji started to dip his own crackers or veggie straws into the puree to feed himself! When a straw cup was introduced, Benji required assistance at first, but within a few days, he was able to independently drink milk from his straw cup! Benji was consistently eating fruit and vegetable pouches, along with any type of cheese! We quickly learned that Benji loved mascarpone and ricotta cheese! Benji quickly started to increase his oral intake with liquids and solids and did not require his g-tube for any supplementation after the 8th day of intensive treatment. Over the course of 15 days including hunger induction and intensive treatment, Benji fully transitioned from being 75% dependent on his G-tube to becoming a 100% oral eater! Benji’s therapist and parents worked together to read his cues and identify what he was attempting to communicate as his body learned how to self-regulate. Benji was now able to express when he was hungry and let his parents know when he was full.

Benji has not used his g-tube since May 16th, and it was removed on August 20th! During the follow up period, Benji’s oral motor skills continued to improve as he gained more experience and he is now able to drink water, and  milk from a straw cup! Benji’s ability to recognize hunger and learn how to regulate what his body needs has had a lasting impact on his overall development. Throughout the intensive period, Benji began to crawl and became more confident in his skills. Benji has learned to eat various foods and has started to eat larger pieces of foods such as bread with almond butter or cream cheese, spaghetti, and pancakes. Benji’s mother shared that although Benji likes almost everything, he currently loves blueberries, meatballs and turkey!

We are so proud of Benji and his entire family! Congratulations on being a tube-free superstar!

Photos provided by Benji’s family

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