If you watch two and a half year old Lucas
Cinkay playing with his friends in Gymboree class or running around
in the park, you wouldn't know that since he was six months old, he
has used an enteral feeding tube as his primary means of
nutrition.
By the time Lucas was eight weeks old, he was
hospitalized twice because of severe acid reflux which resulted in
troubled feedings. Because Lucas was not gaining weight, his
doctors recommended bolus feedings via an enteral feeding tube.
After a battery of tests, at 20 months, Lucas was diagnosed with
complete gastroparesis, a rare chromosome disorder in which the
stomach does not recognize food.
Enteral feeding is required when someone has a
functioning gastrointestinal (GI) tract but cannot get enough
nutrients orally. There are a number of reasons children and
infants may require enteral feeding including prematurity,
gastrointestinal disorders and neurological diseases. For some,
enteral feeding is a short-term solution, for others like Lucas, it
provides long-term nutritional management.
As first time parents, Traci Nagy and her
husband Jon Cinkay had no idea that feeding tubes were an option
for infants, and though they at first hoped that Lucas would not
need to be enterally fed, their misgivings were quickly cast aside
as Lucas began to thrive once the tube was placed.
Lucas' doctors recommended the MIC-KEY* feeding
tube from Kimberly-Clark* Health Care because it is simple to use
and care for, and its low profile provides more freedom of
movement, making it easier for babies and toddlers to crawl and
move around. At one point, Lucas was given a different more
protrusive feeding tube, but Traci quickly realized that the low
profile MIC-KEY* was the ideal tube for such an active child.
"You can barely tell he has it on with clothes,
and he's able to roll around on the floor," said Traci.
Starting Lucas on the MIC-KEY* "was the best
decision we ever made," according to Traci. Because they no longer
have to struggle to get Lucas nourishment, attempts at oral
feedings are less pressured.
Today while Lucas is making progress with being
fed orally, he still gets most of his nutrients through continuous
feeding with the MIC-KEY*, even sleeping with his feeding tube in
place. Now that he is receiving proper hydration and nutrition,
Lucas is an active, enthusiastic and playful toddler.
Traci says that without the MIC-KEY, Lucas wouldn't be alive.
Inspired by her family's experience, she started the website
FeedingTubeAwareness.com, as a support network and information
resource for families of infants and children with feeding tubes.
She is also working to designate the second week in February as
Feeding Tube Awareness Week and started a campaign to get a
tube-fed child on Sesame Street.
