Changing Colors: The Blog of Spectrum Pediatrics

July 31, 2018

Tube-Free Superstar: Meet Declan

Declan was born at term, but he suffered a small stroke before birth, and had the cord wrapped around his neck 2 times during the birth process.  He had difficulties with breathing, and a swallow study showed that he had a discoordinated swallow and couldn’t safely take a bottle.  He got a feeding tube when he was 5 weeks old.

As he got older and stronger, he began taking some purees by spoon, but refused to drink.  He would sometimes take a few pieces of solid foods, like mandarin oranges, but would usually gag and throw up on any pieces.  A swallow study showed that he was still aspirating thin liquids, and his refusal to drink the thicker liquids made practice inconsistent, so he made slow progress.  He was making progress in all areas, but eating lagged behind his other skills.

Declan participated in an intensive wean when he was 10 months old.  During treatment, he became very successful with soft solids, and within a couple of days he was no longer gagging on pieces.  He especially loved brownies, avocados, blueberries and nutrigrain bars.  He lost interest in purees, but began to show some interest in drinking, but he still got congested after drinking thin liquids.  In order to protect his lungs, he got Pedialyte by tube, but was able to take in enough calories from solid foods and purees to get all of his calories by mouth.  Because he was now interested in drinking, he took small sips of thin liquid by cup and the consistent practice helped his swallow improve.  Within a month, he was able to drink all liquids from a sippy cup, including water, juice and milk (although her preferred Ovaltine).  His family slowly reduced the liquids by tube over the next couple of weeks.  Within 2 months of the start of treatment, he was taking all of his food and liquids by mouth and slowly gaining weight without the help of his tube.

Today, Declan is happy and healthy.  His parents report that he “eats like a pig” and the experience with the feeding tube seems like it was a long time ago.  Declan is a great example of the progress kids can make when they are safe, happy and interested and get the opportunity to practice something they enjoy several times a day.  He is definitely an eater, a drinker, and a Tube-Free Superstar!

Photos provided by Declan’s family.



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