Emily Rose - San Diego, California
She was born in Salt Lake City, Utah in May of
2001. We couldn’t have been happier if she was born potty trained. Let me
explain… I am in the Marines and was on an unaccompanied tour in Okinawa, Japan
when I got the call from my wife (Patty) in January of 2001 that her 20-week
routine ultra sound had shown no stomach bubble. She was scheduled to go see a
perinatologist and get a second opinion. The perinatologist confirmed the lack
of a stomach bubble and informed Patty that Emily was also missing her left arm
and there was some developmental problem with her right arm. I returned from
Okinawa and they referred us to a geneticist who told us that Emily had VACTERLS
association. The reason for the lack of a stomach bubble was likely due to her
having tracheal esophageal fistula, a condition where the esophagus fails to
connect to the stomach.
They also told us that we had a high possibility of Emily having an imperforate
anus as well as other associated complications. We were counseled that due
to the extreme fetal anomalies we were eligible to medically terminate the
pregnancy. We debated over what kind of life Emily would have with all of
these medical problems. We decided to hope for the best.
When Emily was finally born, they
gave her APGAR’s of 9 and 9 and told us that besides her lack of arms and mild
hypoglycemia she was a healthy 8lb 9oz baby girl. They totally dismissed the
lack of a stomach bubble from the ultra sounds. Saying her chin could have been
pushed in not allowing her to swallow. Emily went home with mom 4 days later.
We had problems
with feeding and Emily spitting up after just 1-2 oz. of formula. We took her
back to the doctor every day for the next ten days. They seemed to be treating
us as though we were just new parents and didn’t know how to feed a baby.
Finally we got a doctor to order an “Upper GI Air Contrast” on June 8th, which
revealed a wide-open GE junction and severe gastro esophageal reflux. Emily was
admitted into Primary Children’s Hospital that night. They told us that we were
lucky that we didn’t aspirate her. After 6 days in the hospital, they released
Emily with a NJ tube and a pulse-ox machine, stating she had a hiatal hernia
that was causing her small stomach and the acid reflux was causing her to stop
breathing. They did not want to do the surgery because I was pending orders
again and we were moving as soon as Emily was stable.
Once we arrived in San Diego, Emily was scheduled to have her hernia corrected. This is when we were informed that Emily did not have a hernia but had a condition know as microgastria. A very rare congenital anomaly in which the stomach is small and tubular and fails to act as a normal storage organ) The NJ tube was removed and the surgeon placed a piece of surgical tube connected to her stomach for feeding.
This was later replaced with a low profile MicKey fitting and then again with two Bard
fittings one g-tube and one j-tube. The j-tube got very inflamed and has since
been removed and the hole surgically closed. We opted not to have Emily’s stomach enlarged using part of her intestine otherwise known as a Hunt-Lawrence Pouch due to the many complications.
has cut back on her need for the feeding machine from all day to just at night
while she sleeps. Her last exam showed that her stomach is stretching on it’s
own. We just had her first mold for a prosthesis made last week. It will go on her left arm to
give her something to oppose her right. We are not sure if she will use it ,
we just want to give her the option. She already does just about everything
with her feet from eating to playing mommy with her dolls so it will be
interesting how she responds to a prosthesis. As far as walking/running she was almost two years old before she started walking and has taken a few nasty falls on her face; however, we recently we got her a helmet. It’s more for us than for her. She loves climbing and running around with her big sister Katelynn (5), so we put her in it when she is playing on hard surfaces. It let’s us relax a little more not worrying about her knocking out her teeth.
To communicate with Emily send an email her parents, Jason and Patty.
If you want to be a SuperHands Kid or Hero, or know any inspiring stories that would be a benefit to this site's viewers, please send me an email.