LAKEWOOD - A half-million children and adults in the U.S. rely on feeding tubes as their primary means of nutrition.
One child using enteral feeding is 9-month-old Skylar MacDonald of Lakewood. Her parents, Nichole and Lloyd, want people to know about the positive benefit of a feeding tube as a lifesaving medical tool. That is why they are alerting the public that the third annual international Feeding Tube Awareness Week starts Sunday.
The week serves to educate the public about the medical reasons children are tube fed, the challenges tube-feeding families face and about the day-to-day life with a tube-fed child. Feeding Tube Awareness Week connects tube-feeding families by seeing how other families are going through a similar situation, which can make people feel less alone.
Skylar and Nichole MacDonald in their Lakewood home. Skylar is 9 months old and has been wearing a feeding tube since she was 3 months old. Feb. 10-16 is Feeding Tube Awareness Week. Awareness week promotes the positive benefits of feeding tubes as a lifesaving medical intervention and educates the public about the medical reasons children are tube fed.
P-J photo by Dennis Phillips
Skylar MacDonald has been on a feeding tube since she was 3 months old.
Nichole MacDonald said the doctors still don't know what is wrong with her daughter, calling it a "medical mystery."
"They're trying to figure it out," she said.
At 3 months old, Skylar had only gained 1 pound since birth. Her mother said she wasn't able to feed through a bottle, and anything they could get through her month she would eventually regurgitate. At three months, Skylar should have weighed 12 to 13 pounds, but only weighed 7.
Since starting to use a feeding tube, Skylar has been able to add weight. She is now 13 pounds, which is still lower than a typical 9-month-old baby, which weighs 18 to 20 pounds.
MacDonald is thankful for the medical device that is helping her daughter. She said it can be challenging with a lot of negativity surrounding the feeding tube. She said Feeding Tube Awareness Week is an opportunity to embrace the positives, and be thankful that it is helping her child to live and grow.
"Without the feeding tube, she wouldn't be here," she said. "It is a blessing she got it."
MacDonald said they will be taking Skylar to Rochester for a second opinion on her condition. She said they will see a gastrointestinal doctor to see about Skylar's illness. Right now, though, the MacDonalds don't know how much longer their daughter will wear the feeding tube.
"It could be the rest of her life or a few years. We're hoping for just a few more years," she said.
Skylar also has a brother, Brayden, who assists in helping Skylar receive nourishment.
"He's been a great help. Every time she cries, he tries to comfort her," MacDonald said.
In 2011, the first annual Feeding Tube Awareness Week was launched. Each year, parents and caregivers are encouraged to participate in the awareness week by posting through social media, blogging, emailing or making videos. In 2012, thousands of people were with made aware through the Feeding Tube Awareness Facebook page.