She can’t WHAT?

Two years ago, we started the process to get our third child medically treated for something that we had no idea existed even though she has dealt with it all seventeen years of her life. Tomorrow, she is having a simple procedure done to correct a rare and relatively unknown condition. She has retrograde cricopharyngeus dysfunction, or R-CPD. Basically, she can’t burp.

Nope, not even if she drinks soda.

Her gastrointestinal system still produces the same gas that you, I, and every other functional body burps out so often that we don’t even notice it. Her body just lacks the reflex that loosens the esophageal sphincter to allow that burp up and out. Gas from eating, swallowing, and normal GI functions gets trapped right at her Adam’s apple and stays there, causing all sorts of trouble. And it always has.

When she was a baby, she didn’t burp. She didn’t have colic or reflux, but she just wouldn’t burp. After feedings, we’d try to burp her, but would always be faced with projectile vomiting every single time. That’s the only way any air would come out. Her pediatrician told us that her esophageal sphincter was just too tight, and since it wasn’t inhibiting her growth or causing her obvious pain, just let her outgrow it. As she started eating solids, she stopped vomiting with every feeding, so we relaxed and thought it had resolved.

Not until she was in the third grade and our homeschool co-op students tossed around the idea of a “slurp and burp” soup-eating celebration in conjunction with our geography study of Japan did she start realizing that she couldn’t do something that everyone else could. We found it slightly amusing at the time, because again, it wasn’t causing her pain.

All that changed as she entered late puberty. When she stopped growing, her body decided to let her know in no uncertain terms that she had most definitely NOT outgrown that problem we had been able to ignore since her infancy. She started having tightness in her chest, constant pressure and pain after meals that didn’t resolve easily, and an odd gurgling in her throat that sounded like a frog trying to croak. With time, she stopped being able to exercise and do the physical things she’d done before, because the tightness and pain in her chest and abdomen made it hard to breathe. If you are struggling to breathe, it’s difficult to exercise. She also became less able to hold long conversations because of the difficulty breathing.

What seems to you and me to be something of a minor inconvenience was making her miserable. She was withdrawing from normal activities and was not able to enjoy things the rest of us did because that pain was always there. We HAD to get it taken care of.

Unfortunately, most doctors don’t have a clue what to do with someone who can’t burp. We’d already done a fair amount of digging online before we could get in to see her doctor, trying to find simple tricks to help her, and we’d learned that Dr. Bastian at the Bastian Voice Institute had not only identified this as an actual medical dysfunction but was also treating it successfully with a Botox injection into the esophageal sphincter. We had hope that we could have her treated if we could just find a doctor who would be willing to do something that isn’t widely recognized in the medical community.

Her pediatrician was our first stop, and she wanted to “rule out all other possibilities” because just not being able to burp sounded impossible to her. First she prescribed Prilosec to attempt to control the gas production, but that did absolutely nothing, leading to the most ludicrous attempt at a treatment I’ve ever heard: she prescribed my daughter antidepressants to treat what she surmised was an inflated story of pain from a “hormonal teenager”. I insisted on a referral, and we were sent to a pediatric gastroenterologist, who ran some standard tests. First up was a swallow study, then and esophageal motility study. Results of these tests were conclusive: there was nothing wrong with her GI function, so she’s fine. Just take antacids for the pain.

A second pediatric GI at a second university teaching hospital wanted to run even more (invasive) tests to see if she had eosinophilic esophagitis, even though she had literally ONE symptom–pain. I showed him printouts from Dr. Bastian’s studies, and this time, I at least got one remotely helpful answer–“That’s not my specialty; you are going to need an ENT.”

And then COVID-19 shut down the world, so we were stuck waiting until non-emergent referrals were available again. That was last February. This July we finally got in to see the pediatrician again and submitted a referral for a pediatric ENT at Vanderbilt Children’s Hospital. When we received the notice of the referral approval, we were very amused to learn that the doctor she was referred to was named Dr. Belcher! We don’t believe in “signs” but we had a really good feeling about seeing him! When he sat down in the exam room and listened to my daughter talk about what she has gone through and how this has affected her life, then took the printouts about R-CPD from me and read them right there, you could almost cut the anticipation with a knife.

He said to her, “How about we try to get you some relief?”

She and I both nearly cried. After a minute or two when it sunk in to her that he was actually going to do the procedure, she DID cry. Relief? He’s going to do this?? It was surreal. She’s spent the last eight weeks counting down the days, and tomorrow, it happens. She will be getting general anesthesia, have an endoscope placed to check her esophagus, and then one injection of Botox will be administered into her upper esophageal sphincter. That’s it. Once she’s awake and stable, we will go home. Hopefully and prayerfully, she will be burping within a day or two and will be able to start living again!

Let’s do this.

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