By Sarah Wyssmann

Our oldest daughter Elizabeth, who is now seven and-a-half, was born
premature, weighing 1 pound, 11 ounces. Though she was born with
many health challenges, one of the biggest battles we faced early on
was her severe reflux, GI pain and, of course, eating problems.

Initially, Elizabeth was able to get the NG (nasal feeding) tube out before coming
home from the hospital, but we had no idea of the journey that lay ahead.
In the early months, she seemed to be thriving even amidst her diagnosis
of chronic lung and GI problems; although, very quickly we knew that something
was not right. She was in pain all the time, and with daily projectile
vomiting and crying episodes, in addition to an obvious disinterest in eating,
we were struggling. Our pediatrician said we needed to keep trying solids,
but she was bound and determined not to let anything in her mouth except a
few bottles a day. What were we missing?

It wasn’t until she was 18 months old that we discovered Elizabeth was
“failing to thrive.” She started falling off the growth chart completely (even
for her adjusted preemie age), and after many additional tests, we still had no
answers as to why she wouldn’t eat.

Then, about a year into feeding therapy and still no improvement, a
feeding tube became the obvious “solution.” However, six moths after they
surgically placed her G-tube, Elizabeth went from bad to worse.

Our routine was something like this: We would give her an eight-ounce
feeding over the course of an hour, and 50 percent of the time it would all
come back up at the end. Considering that she needed feedings every three
hours – when she would vomit after the feeding – we would have to repeat
the hour-long feed, and then plan to start anther one an hour or two later. It
was an all-day and all-night exhausting and frustrating battle that we felt we
were losing again and again!

Something was wrong. We didn’t know what to do and, quite honestly,
neither did our doctors. So we started group feeding therapy, and there I
began to hear very similar stories. After putting the pieces together and coming
in contact with another preemie mother, she referred us to a doctor that
specialized in preemies just like ours.

We raced to make an appointment, and soon came to realize that all our
problems were closely intertwined – from “failure to thrive,” to feeding aversions,
to poor sleeping habits, etc.”

As our new doctors at the University of Kansas Medical Center explained,
a critical piece to Elizabeth’s health was her exceptionally premature nervous
system. In fact, our health care team helped us understand that the nervous
system can develop over-active sensitivities, where instead of feeling less
pain, normal bodily functions actually become painfully exaggerated – even
normal processes such as digestive contractions.

A healthy child or adult with a normal nervous system doesn’t feel their
stomach contracting, but not a child like Elizabeth. We came to find out this
is a big reason why so many preemies’ GI systems are so out of sorts. They
grow to learn these pain responses and develop unnatural feeding aversions
because food is consistently associated with pain. (The medical term we were
given is Visceral Hyperalgesia.)

As our doctors worked with us to “reset” Elizabeth’s nerve responses, they
prescribed a short, temporary treatment with two medications – much like
the one used in the feeding tube clinical trial featured on page 18.

Bottom line: We were willing to try anything. Elizabeth was still vomiting
every day, weighed 23 pounds at age three and-a-half, and her solid food
intake was zero. It could only go up from here!

Two days after starting the medications our doctors prescribed, Elizabeth
stopped her vomiting episodes, and she also started to sleep through the
whole night. Something was definitely different.

Though the medications made her tired and a little unhappy at times, she
was not in pain anymore, and that was life changing. After six months, she
started to try food. Another six months and she was eating 50 percent of her
food and keeping it all down. One week before she turned five, she got her
feeding tube out for good! For us, personally, this was a direct answer to our
prayers. It gave us great hope to finally see Elizabeth thrive after such a long
battle.

Elizabeth is still small and has some obstacles to overcome, but she loves
all different kinds of food, and she is a happy little girl and pain free. She
takes growth hormone shots every day and is not even bothered by it.
“She’s our little hero,” as her younger sister Hannah would say!

Sarah Wyssmann lives in Lee’s Summit with her husband, Jason, and their three
children – Elizabeth, seven and-a-half, Hannah, five, and Benjamin, one.