Josue Oliveira loves mealtime. In his large family — he’s the youngest of five kids — that means gathering around the table to enjoy traditional Brazilian dishes full of rice, beans, vegetables, and chicken. For this 4-year-old, though, dinner is a little different. Instead of picking up a fork or spoon, he gets his meals through a feeding tube, in the form of a blended diet.
Josue was born with an extremely rare chromosomal disorder: At the time, he was believed to be just one of two people in the United States with the condition. He also has both the classic and vascular types of Ehlers-Danlos syndrome, which affects the joints, connective tissue, blood vessels, and the heart and other organs. But it was a related concern that brought Josue — who already receives his care at Boston Children’s — to the Aerodigestive Center.
‘We would do anything to help him’
Josue’s mother, Juliana, knew something was wrong with her son about a year and a half ago when he lost interest in eating and stopping growing like he should. “He just didn’t have enough energy because he wasn’t getting the nutrition he needed,” says Juliana. “We tried all sorts of remedies to whet his appetite, but nothing worked.” Meal times were becoming very time consuming and stressful for both Josue and his family.
An endoscopic evaluation by Dr. Maireade McSweeney revealed inflammation in his lower esophagus. Josue needed more nutrition and medication to help him thrive. Although the family had hoped to avoid the need for a gastrostomy tube (g-tube) to deliver nutrients through his stomach, they knew it was the right decision, says Juliana: “We would do anything to help him.”
Getting a place at the table
Although Juliana had assumed that Josue would need to receive nutrients through his g-tube in the form of commercial formula, she was surprised — and thrilled — to learn that there were other options, too. In fact, she could feed Josue many of the same meals that she and the rest of the family enjoyed, explained Lauren Jalali, a clinical nutrition specialist in Boston Children’s Nutrition Center.
“Lauren knows that cooking is a big part of our culture,” says Juliana. “I love that she opened my mind to the fact that Josue doesn’t just have to have formula — I can actually feed him traditional meals through his g-tube by blending them.” (Blended diets are made from table food that is put in a blender, turned into a puree and fed to a child through a feeding tube.)
That means that Josue doesn’t just have a place at the family table: He’s also an active participant. “I blend his meal, let him have a taste of it, and then put it in his feeding tube,” says Juliana. “He enjoys it more, and so do I, because it allows him to be with the rest of the family.”
Helping Josue thrive
When Josue isn’t hanging out with his siblings, he’s exploring the rest of his home (including the refrigerator), playing his toy guitar, and listening to music on his iPad. “Before his g-tube and blended diets, he didn’t seem like a kid — he was miserable all the time,” says Juliana. “Now, he’s discovering everything. He’s a very happy boy.”
She credits Lauren and the rest of Josue’s care team with helping him thrive. “When you have a child with so many challenges, it’s great to have a team that takes time to support you and encourages you to try new things,” she says. “It really feels like people believe in him — and in me as his mom.”
Related Posts :
Study shows benefits of blended diets
Medically complex children often receive nutrition through gastrostomy tubes (G-tubes) or gastrojejunostomy tubes (G-J-tubes), frequently in the form of conventional ...
Taking a leap of faith: Jack says goodbye to his G-tube
As they waited for their son Jack’s appointment, Marika and Josh Reuling had no indication that July 17, 2018, would be ...
Doing everything possible for Gabby: A team approach to short bowel syndrome
Gabriel “Gabby” Lopez loves everything hot and spicy. “He will eat a ghost pepper without hesitation,” says his mother, Mayra. “...
Six ways to keep kids with aerodigestive disorders healthy
There’s probably not an adult or child who hasn’t experienced the stuffy nose and difficulty swallowing associated with ...