Ramona Torres’ twins were born seven months ago — and eight weeks early.
The Mesa family welcomed the boys at just 32 weeks gestation. Immediately, Torres felt something wasn’t right.
“They were in the room with me. I kept telling the nurses, ‘There is something wrong. They’re not eating.’ ”
The children were put on feeding tubes and spent time in the neonatal intensive care.
But even after coming home, “they were turning blue when they ate,” Torres said.
So she sought out help and is now one of a growing number of families who are learning about feeding issues and feeding therapy offered around the East Valley.
With assistance from Cardon Children’s Medical Center staff, the twins were diagnosed with swallowing issues. One has acid reflux.
Kelly Van Dahm, a speech language pathologist with Cardon, has worked in outpatient therapy for years. She saw the twins when they came in and recommended a swallow study involving X-rays to determine what happened when they were fed.
“They were choking and coughing when they ate liquids. They were going down the wrong way,” she said.
Van Dahm said Torres had gone through a lot, “just the stress of feeding kids who have trouble feeding. There’s such emotion tied in as a parent with feeding a child and making sure they’re growing.”
Therapy and thickening of their food has helped the babies to swallow. Now they are growing, and Torres said another planned evaluation may result in their food being thinned more.
Parents of children who struggle with eating, from issues that require a tube to sensory diagnoses when children appear to be picky eaters, have a helping hand in the Valley.
In 2006, Chris Linn and Shannon Goldwater founded POPSICLE (Parents Organized Partnerships Supporting Infants and Children Learning to Eat). Linn, the executive director for the group, got involved because her daughter, now 7, was born at 25 weeks and suffered from feeding issues.
“People are becoming more aware of it now even more than two or three years ago. It’s still a very misunderstood issue,” she said. “What we find is a lot of people know a child with feeding issues but they don’t know they know a child with feeding issues.”
It may be a child with cerebral palsy or autism or Down syndrome.
Many parents first turn to the family doctor or pediatrician when they notice issues.
“As soon as the parent feels the meal time is not enjoyable for the parent or the child, there’s a problem,” Linn said. “Some of the times they’ll go to their doctor and start articulating this. Many times — the docs have only so much time — they’ll say, ‘It’s only a phase. Let’s see if they outgrow it.’ Then the mom or dad go home with the child and three months later they come back.”
Some may be referred to a gastrointestinal physician who can determine if there are issues going on in that area — such as the acid reflux the Torres family has seen. Medication may be suggested. Food changes may be required.
Depending on the situation, there may be a referral to a speech language pathologist or occupational therapist who specializes in feeding issues.
The Valley has long had a shortage of speech language pathologists, and there are even fewer who work with these special kids.
“They understand we need to enhance the services for these kids and they’re grateful for a place to send parents for the social and emotional piece, too,” Linn said.
Though it was a slow start at first, Linn said she now fields about 20 calls a month from families, plus she meets dozens who come to the group’s workshops.
Many are frustrated. Some need validation that there is indeed a problem. Parents are very emotional about feeding issues when it comes to raising a child.
“The parents feel like failures because they can’t nurse their child the way they want to nurse their child. I try to tell them that’s a normal reaction. I try to help them with that guilt,” she said.
A number of new locations are opening up and offering feeding therapy. Cardon Children’s is looking to expand its services. Southwest Human Development has started a focus on children up through age 5, Linn said.
It’s welcome news to moms like Torres. Immediately, with help, there were changes.
“It was like night and day.”