Feeding Therapy in a Vacuum

cerealHere’s the crazy thing about taking my 8 year old daughter to feeding therapy: no one important really knew we were there.

There was a complex set of circumstances that brought Sammi to the cheerful basement office suite forty minutes from our house. Unaware of this were a host pediatric medical specialists: an office of gastroenterologists, a cardiothoracic surgeon, an otolaryngologist, an endocrinologist, and her general pediatrician. Though all of them examined her, declared her capable of eating, and recognized that she did not, in fact, eat well, not one of them had recommended feeding therapy.

They didn’t recommend it when, despite the compression on her esophagus having been surgically relieved possibly for the first time in her life, she failed to eat any meal in under an hour — including a simple bowl of cereal at breakfast.

Thank heavens I’d heard of this type of therapy, ironically because Sammi had been prescribed it by the otolaryngologist seven years before, when she was a one-year-old baby failing to thrive. At that time, I’d taken her to the clinic inside the children’s hospital — also a basement room — where they plopped her into a high chair after a morning without food and watched her poke half-heartedly at a few chunks of watermelon and some smashed peas.

“You nurse her too much,” they’d said. “She’s never hungry because you’re always nursing her.”

That time, they put us on a schedule for a week. I was allowed to nurse her three times per day for only fifteen minutes at a time. She was also allowed to spend 30 minutes in her high chair three times a day with a meal in front of her. They warned me that she’d hold out for milk for a few days, but then she’d start eating her solid food.

After one week on this plan, Sammi lost half a pound, which at that point was roughly five percent of her body weight.

“Oops,” said the feeding therapists. “I guess mom knows best. You can go back to nursing her.”

Shortly after that, we learned that her aorta was branched into two pieces and wrapped around her airway and her esophagus, requiring major surgery. Breastmilk, it turned out, was indeed the most efficient way of feeding her. It turned out that when I said my daughter would not subsist on solid food, I’d known what I was talking about.

Seven years later, sitting in another feeding therapy office, the situation was murkier. After major surgery to relieve a new compression on her esophagus, I knew with relative certainty that her esophagus was not causing her swallowing problems. By the time we started this round of therapy, Sammi was allowed an unrestricted diet — no longer in the six-food-elimination or allowed only fat-free food — and I suspected that though she was not eating enough food, she probably could.

All her doctors knew that too, but without much concern for that aspect of her health — the traumatized, disrupted relationship with food and her underweight, slowly developing frame — they released her from their care, one by one, as the body parts covered by their areas of specialty healed. Eventually, I’d found myself back in her pediatrician’s office, asking why she still didn’t eat well, two months after her surgery.

Perhaps I was short-sighted. Perhaps the pediatrician knew what I was no longer patient enough to imagine — that this kind of healing takes longer than two months, and that, left alone for long enough, Sammi might start eating normally on her own. The pediatrician waved me off.

On my own, then, I did what I’d been doing since Sammi was a baby: I found more help. I searched for “feeding therapy,” and I found this article from the American Speech-Language-Hearing Association. Among other things, I was taken by these items from the list under the question “What causes feeding and swallowing disorders?”

  • gastrointestinal conditions (e.g., reflux, “short gut” syndrome)
  • prematurity and/or low birth weight
  • heart disease
  • conditions affecting the airway
  • multiple medical problems
  • respiratory difficulties
  • problems with parent-child interactions at meal times

Check. Check. Check. Check. Check. Check. Check.

Armchair diagnostician that I’d become, I called the nearest well-reviewed feeding therapist and completed her intake process. There was no one interested in this at Sammi’s former gastroenterology practice, the cardiothoracic surgery department, or the otolaryngology office. Her wonderful, beloved, treasured pediatrician’s only response was a shrug and a sentiment along the lines of “if you WANT to, there’s nothing WRONG with it.”

Allow me to recap: my child, after years of medical trauma involving her esophagus, ate very little and at a snail’s pace, and not one medically professional soul thought to suggest feeding therapy.

Thank goodness for my instincts. Thank goodness for health insurance, moxie, and a working car. Thank goodness for Julie, the therapist there who took Sammi by the hand, walked her into a room with kid-sized tables, set her lunchbox in front of both of them, and shooed me back to the waiting room.

After years of me pushing for Sammi, it was time to let Sammi push for herself — under the watchful eye of no one but her own body, and the chance to get to know it better.

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2 thoughts on “Feeding Therapy in a Vacuum

  1. It’s so scary how much patients have to advocate for themselves. You are such an amazing mom for following your gut and standing up for your little girl. I know from experience how difficult and frustrating that can be.

  2. […] the summer of 2014, Sammi began to visit a feeding therapist weekly. She had spent the previous eight-and-a-half years with her eating restricted either by a variety […]

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