Williamsburg family promotes 'tubie' awareness

Feeding Adam

Adam's needs are constant. Last April, after he failed to gain even an ounce in a month, he had surgery to place a G-tube (gastrostomy) in his stomach. He still spit up constantly, going through 100 burp cloths a day, according to Aaron. In May, using the same port, a GJ tube (gastrojejunal) was inserted to bypass the stomach and go directly to the intestines. He still throws up frequently, but unlike before, little comes up.

In October he started new, more effective medicines, and Sullivan, his gastroenterologist, has also administered a couple of Botox shots endoscopically.

Most often associated with cosmetic procedures for wrinkles, the toxins in Botox have a paralytic effect. In Adam's case, it helps the passive emptying of his stomach, said Sullivan. The Marcerons rely on Sullivan not only for his medical expertise — they credit him with saving Adam's life — but also his overall support.

"He has just gone above and beyond. He really cares and loves Adam," they said of the doctor at Naval Medical Center Portsmouth.

In anticipation of eventually weaning Adam from a feeding tube, the family feeds him minuscule amounts by mouth.

"He eats like a new baby," said Katie. "We practice every day to build skills."

He likes pureed bananas and apple sauce but not vegetables, she added. His main nutrition from prescription baby formula is delivered at a little over an ounce an hour in a constant drip through the tube.

On a recent weekend, the pump malfunctioned overnight precipitating a crisis that resulted in a hospital visit for rehydration. Typically his pump has a 24-hour battery life. In anticipation of Hurricane Sandy last fall, the family purchased a power pack that can recharge the battery for another 24 hours of use.

Kaylee and the video

In "Amazing Adam's Story," the 4-minute video that follows Adam from birth through his health struggles, (http://www.youtube.com/watch?v=KfFBVoInqkw) Kaylee narrated in a strong, clear voice about her "cute little brother." She told how he loves to watch TV — SpongeBob is his favorite — and play with musical toys.

She requested to show the video to her classmates.

"We were all on board. We were very touched that she shared such a personal experience. She's an amazing little girl," said Katie Gaylord, a school counselor at Waller Mill Elementary. "She's an advocate."

About the test

Exome sequencing, a new DNA analysis for diagnosing genetic disorders and mutations, became available commercially last year. Half a dozen companies across the United States offer the testing, which must be ordered through a health care provider. The sequencing of the 20,000 genes involved in protein production costs between $7,500 and $10,000. It takes six months to get the results, which are derived from a blood sample. It has a 97 percent success rate in pinpointing genetic changes. Genetic counselors advise that the test's ability to detect a predisposition to certain health problems, such as Alzheimer's, which currently has no cure, raises complex ethical issues.

Want to know more?

The volunteer organization Feeding Tube Awareness Foundation, a nonprofit founded in 2010, hosts a web site, http://www.feedingtubeawareness.org, for families and friends of "tubies" and promotes an annual awareness week. The foundation also has a Facebook page, Feeding Tube Awareness, where caregivers can find "real time" support and answers to questions.

More online

To see the video 9-year-old Katie Marceron made about her baby brother, Adam, go to http://www.dailypress.com or http://www.youtube.com/watch?v=KfFBVoInqkw.