Our daughter Hannah was born 11/22/17. She's our fifth baby and a welcome surprise caboose for our family. At 6 days old she was diagnosed with a rare condition called cricopharyngeal achalasia, also known as cricopharyngeal hypertrophy, bar, or narrowing. It is a congenital defect involving the upper esophageal sphincter muscle that is too large and impairs the swallowing process, kind of like a pinch in a hose.

At 8 days old Hannah underwent a procedure to dilate her esophagus and reduce the muscle with Botox injections, but unfortunately, the procedure was unsuccessful. On March 16 she had a myotomy of the muscle, and she is now able to swallow. After 4 months on a feeding tube, she is finally able to eat by mouth.

This is her story that is still being written.

Thursday, March 15, 2018

Glossary of Terms


Here are all the new words I've learned in the past 3 1/2 months.  There might be a pop quiz later. 😉

She's such a happy girl!
Achalasia-failure of smooth muscle fibers to relax, which can cause a sphincter to remain closed and fail to open when needed. Most often associated with cardiospasm of the lower esophageal sphincter, but the term is not exclusive.

Atresia-absence or abnormal narrowing of an opening or passage in the body

Aspirate-condition in which food, liquid, saliva, or vomit is breathed into the airway (this is bad!)  Can cause aspiration pneumonia.

Bolus-the mass of food or liquid in a single swallow. Also refers to the administration of food or medicine in a single dose or preparation given all at once.  "Bolus feeding" means administering food all at once rather than continuously. We still haven't been able to get to bolus feeding with Hannah.

Botox-Not just for plastic surgery. It's an injection that paralyzes a muscle but is only temporary, lasting about 3 months. We tried Botox for Hannah at 8 days old and it didn’t work 🙁

Bronchoscopy- an endoscopic technique of visualizing the inside of the airways for diagnostic and therapeutic purposes

CP-abbreviation for cricopharyngeas, the sphincter muscle at the top of the esophagus

Dilation- to make something bigger. Think "dilate" pupils at the eye doctor, or dilating during labor

Lexie just loves her baby sister!
Dysphagia- symptom described by difficulty swallowing (not to be confused with dysphasia, which is a speech disorder)

Endoscope- flexible tube with a light used to examine the digestive tract

Endoscopic- procedure using natural body openings and an endoscope

Enteral- involving or passing through the intestine, either naturally via the mouth and esophagus, or through an artificial opening. Any kind of tube feeding is considered enteral feeding.

Esophagram- When the upper GI tract is coated with barium, the radiologist is able to view and assess the anatomy and function of the esophagus, stomach and duodenum through fluoroscopy

Esophagoscapy-Using an endoscope inserted down the throat to examine the esophagus.

Fistula-an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs. When Hannah was first hospitalized, we thought she might have had a TEF (tracheoesophageal fistula, or a connection between trachea and esophagus)

Fluoroscopy- imaging technique that uses X-rays to obtain real-time moving images of the interior of an object

Laparoscopic- procedure using a small incision and an endoscope

LES-Lower esophageal sphincter

GI- gastrointestinal

Hospitalist- a dedicated in-patient physician who works exclusively in a hospital.

Hypertrophy-increased size of muscle. You've probably heard the antonym "atrophy" when a muscle has lost its strength

Manometry- a test to assess motor function of the upper esophageal sphincter, esophageal body and lower esophageal sphincter (but probably not for babies)

MBS-Modified Barium Swallow- a radiologic examination using fluoroscopy in order to evaluate swallowing function in mouth, throat, and upper esophagus, usually just referred to as a swallow study.  The test may evaluate ability of the patient to swallow liquids in a variety of thicknesses.  Barium Swallow, on the other hand, focuses on the propulsion of liquid through the esophagus and into the stomach.

Motility-ability to move food spontaneously and actively through the digestive tract

Myotomy-surgical procedure to cut a muscle

NG tube-a nasogastric feeding tube going through the nose to the stomach for enteral feeding. Naso- refers to nose and -gastric refers to stomach.

NICU-Newborn intensive care unit

NKDA-abbreviation for "no known drug allergies"

NPO- Abbreviation for latin term nils por os, meaning "nothing by mouth" Hannah has been NPO since she was 6 days old.

OT-Occupational therapist

Owlet- baby monitor that wraps around baby's foot to monitor oxygen and heart rate. Gives parents peace of mind but doctors hate it

Oximeter- Device using infrared light to evaluate pulse rate and oxygen rate. Pulse oximetry is a noninvasive method for monitoring a person's oxygen saturation.

Peristalsis-series of involuntary wave-like muscular contractions that push food down the esophagus

Secretions- mucus and saliva. Anything your nose and mouth produce on their own that has to be swallowed

She actually hates tummy time.
SLP-Speech language pathologist. In our case, also a feeding therapist. Our SLP is helping Hannah maintain her oral skills and will help us teach Hannah to eat by mouth after she has her surgery.

UES-Upper esophageal sphincter

Polyhydramnios-excess of amniotic fluid during pregnancy. In our case, caused by baby's inability to swallow in utero

Stricture- narrowing of the esophagus (or other bodily passage)

Zebra-Shorthand for the aphorism coined in the late 1940s by Dr. Theodore Woodward, professor at the University of Maryland School of Medicine, who instructed his medical interns: "When you hear hoofbeats, think of horses not zebras". It means an obscure and rare diagnosis, also called fascinoma.



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