Raising a child who is dependent on medical technology - either for a short time or throughout their growth and development - can be stressful and complicated. For 5-year-old Asia and her mom, Adilene, life with a feeding tube has been an uneven journey.

A feeding tube (also called a gastrostomy tube or g-tube) is inserted through the belly and provides nutritional support for children who are unable to safely take food and liquids by mouth. Every child is different, and while some may need the benefits of a feeding tube for their entire lives, many children can be weaned off the tube as they grow and heal. La Rabida is highlighting Asia's story as part of Feeding Tube Awareness week, a week used to promote the positive benefits of feeding tubes as lifesaving medical technology.

Asia was born premature with a cleft palate and an undersized jaw. After five months in a neonatal intensive care unit (NICU), multiple surgeries, and several weeks of recovery aboard the S.S. La Rabida inpatient unit, Asia finally went home to her family. Her condition and the surgeries to repair her face and mouth affected Asia’s ability to eat. In early 2018, the decision was made to surgically implant a feeding tube that would ensure she was receiving the nutrition her growing body needed.

Over the next several months, Asia refused to take any nutrition by mouth. “It got to the point that Asia wouldn't take a single bite. She would see food and start crying,” shared Asia’s mom, Adilene. “Sometimes I would pause the tube feeds and be like, okay, I see you're hungry. You're going to have to eat food because I know that you're capable of doing it.”

That’s when Adilene turned to the team at La Rabida’s Oral Motor Feeding Clinic for support. The team of physicians, nurses, dietitians, speech therapists, social workers, occupational therapists and physical therapists helps families develop therapies and strategies that promote good eating habits and reduce stress at mealtimes.

"I had never heard of La Rabida before, but as soon as I got here, I felt welcomed by everyone"

“The first thing we establish with families is that they understand that tube feedings are a meal as well and should not be viewed as another medical procedure,” says Elizabeth Maciel, M.S., CCC-SLP, a Speech Language Pathologist at La Rabida. “Even if a child is not eating yet, they can still participate in feeding experiences. This can include a child sitting at the table while receiving their tube feed, watching others eat, and playing with cups/spoons.”

Asia and her mom meet with the team at La Rabida every few weeks to create positive experiences with food. “During this process, it is very important to let the child be the one deciding what foods they are willing to try and when,” said Elizabeth. “When you allow a child to participate and choose if they want to try a food, it can make mealtimes less stressful and more fun for the patient and the caregivers.”

By using these strategies at home, Adilene has seen great progress, “it’s amazing that now she knows the difference between eating food and a tube feeding. She knows that if she gets a tube feed, she's getting full because it's food. She says no, I don't want as much from the tube because she's already full from the food that she just chewed and swallowed.” Asia’s favorite food this month? “Peanut butter, she can’t get enough!”

"La Rabida gives us the support and courage to continue with the therapy at home"

Asia is now down to only 1 or 2 tube feeds a day and her care team is expecting to remove the feeding tube later this year. “We want our families to know that they are not alone. As a team, we can help the family and child become more comfortable with their g-tubes,” added Elizabeth.