husband and I have a very healthy daughter, born in 2002. In
March of 2005, my husband and I lost a baby at 23 weeks gestation
to a heart anomaly called Epstein’s. Then we got pregnant
again in May 2005 and at 12 weeks of gestation the baby was
diagnosed with a gastroschisis. I was shocked to find out that
I had another baby with an anomaly. We had genetic testing and
counseling, and as much as they would have liked to link the
two pregnancies, they could not. They were completely different
and independent anomalies
I started my pregnancy in Chicopee, Massachusetts and then
my husband got a new job East of Cleveland, Ohio. I had to find
a new doctor and a level III hospital that we could trust with
our special baby. Dr. Mitchell Reider is the best OBGYN I have
ever encountered. He was experienced with gastroschisis pregnancies
and was very calming during my entire pregnancy. Kelly was born
vaginally at University Hospitals in Cleveland on January 16,
2006. She was immediately sent to Rainbow Babies and Children’s’
Hospital (just next door). She was born classified with a very
large defect, all of her intestines, bladder, ovaries, appendix
etc outside of her body.
The pediatric surgeon was able to do a primary closure four
hours after she was born. She was in the NICU (neonatal intensive
care unit) for 17 days. Then she was moved to the step down
floor for 7 days. When she was in the NICU she was on antibiotics
as a precaution to kill off anything that may have entered her
system after birth and before the closure. She was on the TPN
(total parental nutrition) and lipids for about 2 weeks. Her
first feeding was pedialyte fourteen days after she was born.
Two days after that she was able to have controlled amounts
of breast milk and a week later they let me nurse her.
Five weeks after she was born, she gained over a pound, and
is doing great. I did a lot of research on the internet during
the pregnancy, hoping to find answers to my questions regarding
this mysterious defect. The tales of loss and grief far out
weigh the positive and happy ones. I offer this advice; try
not to get discouraged or sad. Stay on top of the doctors and
nurses; make sure you stay informed about your baby’s
health and the new advances in medical technology. We live an
hour from Cleveland and it was very tiring commuting, but I
felt it was important that I check up on her and the medical
care she was receiving.
I had to commute 2 hours for those 17 days she was in the
NICU, but then she went to the “step down” floor
where I was able to room-in with her. That was a true blessing.
I could stay with her and do all of her primary care. I did
not leave her side until we came home from the hospital, a week
later. I know how difficult it is to care for a family (my husband
and 4 year old) and a baby in the hospital. Thank God I had
my mother to come and stay with my older daughter. I am very
happy with Rainbow Babies & Children care and facilities.
They let you room-in with your child; provide a refrigerator,
bathroom and a lot of great medical care. However, NO ONE is
going to take care of your child as well as you can. Be there
with your child as much as possible.
Update as of July 30, 2006
On April 9, 2006 (2 ½ months old) Kelly was noticeably
uncomfortable. She was pushing her bowels but nothing was coming
out, gas or feces. She was screaming and crying so much that
she exhausted herself and slept for 3 hours. She did not eat
or have a bowel movement for 9 hours when I took her to the
emergency room at Rainbow Babies and Children’s Hospital.
Prior to April 9th, Kelly had eaten every 2-3 hours and had
10-14 bowel movements a day!
We went into the hospital at 9pm and the doctors could not
decide to admit her. They did an x-ray and saw nothing. They
admitted her to the hospital and decided to do an upper-GI the
next morning. FYI: an upper-GI takes 24 hours of x-rays to complete.
Getting her to drink the barium was a challenge – she
kept throwing it up – it was all over me and her and the
floor. They ultimately saw nothing from the upper-GI. I talked
to her pediatric surgeon (Dr. Parry) and we decided to wait
it out and perhaps she would pass the obstruction on her own.
She was receiving fluids through an IV, but no calories. After
3 days of fluids, we decided that Kelly needed surgery to find
We made a list of questions to ask Dr. Parry before her surgery:
What do you think you will find? (Twist, pinch, intestinal damage)
Do you think you will have to remove any of her bowels? What
will her recovery be like? What kind of painkillers will she
have? How long will she be on antibiotics? When can she eat?
What is the first thing that she can eat? How much longer do
you think she will be in the hospital? The surgery was expected
to take one to two hours. Four hours later Dr. Parry came out
with Kelly. He found many adhesions (pinching points) and a
very large twist that only a small amount of feces could have
traveled through before shutting down completely. He believed
that her bowels had been in this position since the original
closure after birth. He cut the damaged portion out and removed
When we first saw her, she looked like she was (and I hate
to say it) dead. She was not responsive and was still very heavily
medicated. The first night was the hardest because I did not
want to fall asleep for fear that she would die or her pain
medication would be forgotten. At 2am, Kelly woke up screaming
very loud and very painfully. I could sense her pain and began
to cry too. Her morphine was 2 hours overdue! I searched for
the nurse desperately until I finally got so mad that I pushed
the panic button and everyone came running. From that moment
on, I decided that I was going to have to be more aggressive
in my daughters’ medical recovery.
Waiting for your child to have a bowel movement was much like
waiting to go into labor. Everyday I told myself, ‘today
is the day she is going to poop’. After six days of recovery
she finally did poop. Kelly had a diaper change and drank pedialyte.
Then she had another bowel movement and got some breast milk.
She ate regularly and had more bowel movements and came home
the next day.
January 22, 2007
Kelly has celebrated her first birthday and I am forever grateful.
It seems like yesterday that we were in the hospital everyday
visiting her. She has wonderful health, is growing beautifully
and is a very happy and normal child. While I was pregnant with
Kelly, I was desperately trying to find answers to my many questions
of gastroschisis. I found few documented cases and found no
one to talk to about it. Please if you need to talk to an actual
person who has been through it, email me: firstname.lastname@example.org,
I would love to talk.