by Hadassah Ryan

Created on: March 28, 2009

A gastronomy tube, or g-tube as it's commonly called, is a tiny piece of equipment that I never dreamed I would come to rely on to the extent that I did for three and a half years.

As our firstborn came into the world, I was given but a moment or two to gaze into his bluish face and take in his distressed expression. From day one, even he knew that something was not right. He was soon outfitted with a tube down one nostril to help him breathe, and another down the remaining nostril to enable him to eat. Having been born with a rare birth defect called Pierre Robin Sequence, Jairus had a cleft palate and an underdeveloped jaw that forced his tongue to fall back into his airway. Bottle feeding was dubious. Breastfeeding was out of the question.

When Jairus came home from the hospital at 2 months old, we were well acquainted with the ins and outs (literally) of tube feeding. We gave him daily trials with a special squeezy bottle to encourage him to feed orally, but always ended up "topping him up" with his naso-gastric tube. Earnestly we continued these trials, hoping that Jairus would improve and become capable of sustaining himself by mouth. The months crept by despairingly as he was only able to swallow one to two ounces per feed at best.

As his cleft repair surgery drew near, I came to the distressing conclusion that my son was not going to feed orally anytime soon. We were advised to have a g-tube surgically placed in his stomach.

Having been in contact with other parents of children with PRS, I was familiar with the procedure. An incision would be made through his abdomen and into the wall of his stomach. The tube was secured in place by means of a small, saline filled balloon on the inside of his stomach.

The specific style recommended for our son was called the Mic-Key Button. A pair of brothers I had known as a child had been required to use g-tubes for a liver disorder. I recalled the long, yellow tubes that had hung from their distended bellies and was ever-so-thankful that we were in a more advanced age. The Mic-Key Button (of course, called a Mickey) was considered a low-profile feeding tube and protruded only a half inch or so from the surface of his stomach.

With Jairus' weight plummeting and reflux beginning to affect him severely, we felt there was no choice. We were able to combine the g-tube surgery with his cleft repair.

The first new skill we acquired after the surgery was the use of a pump. Up until that point, Jairus' milk had been delivered by

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