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After two miscarriages and two failed in-vitro fertilizations,
my husband and I were finally going to have our baby. I had
begged my doctor to induce labor because I had retained a lot of
water and I had developed a blood clot in my leg. It was hard to
move at all. So on August 4, the day before my due date, I was admitted
to the hospital and induced. The next day, after many epidurals
and only dilating to six centimeters, they decided to perform a
C-section. Morgan Lynnae Jones was finally here. Five minutes
after birth, she had apnea, and they whisked her off to the NICU.
A few hours later, my husband tried to bottle feed her because I
was still recovering. She could not keep any of her food down
that first day, and still had trouble the next few days. The hospital
gave her Isomil and said that it was just a lactose intolerance.
They also said that she cried all of the time, but they said
that it could be normal.
After being in the hospital five days, we finally
got to bring her home. She always spit up and cried all the time
(I had ear plugs around the house). Our pediatrician said that
she looked good and that it was just irritable crying syndrome.
We did not know any better because Morgan was our first child.
In November, our pediatrician noticed a few things.
She noticed that her eyes were not focusing yet and that Morgan's
head seemed to be larger than other children her age. First
she sent us to see an opthamologist. He was perplexed at what he
saw, so we were sent to see a pediatric opthamologist at the University
of Kentucky. This doctor told us that he had never seen anything
like this before. He thought it could be Morning Glory Disk Anomaly,
but he was not sure. A retina specialist also looked at her. They
both were stumped. The most they could tell us was that she possibly
would be legally blind. Next, we went to Cincinnati Children's Hospital
to see a neurosurgeon. He looked at her CAT scan and said that things
looked normal. He determined that my husband's family had large
heads, so she was just taking after his family. We thought everything
would be OK other than her eyesight, but we were just happy she
was here.
On January 9, I fed her cereal and a bottle.
About five minutes later, it all came back up. When I went to change
her I noticed something orange in her diaper. I got scared. I called
the doctor's office, and they told me to go to the ER. We got
to the ER at 11 am. They determined that she had the flu and
that we were going to stay overnight. It was 5 pm when she finally
got fluids, and she had not kept anything down that day. That night
and the next day, she seemed be okay. She could keep down Pedialyte,
but no formula so we were going to stay another night. On that night
the IV box beeped for 20 minutes. After not having fluids for that
short of time, she started to have a seizure. Our pediatrician
decided there had to be more wrong, so she sent us by helicopter
to Cincinnati Children's Hospital.
The hospital did every test imaginable: X-rays,
blood tests, EEG, MRI, eye exam, retina exam, and eye ultrasound.
We had talked to so many doctors, we could not remember anyone's
name. After two days of tests, they discovered that she had a
small frontal lobe with fluid and blood around it, and that her
retina was somewhat detached with blood on it. They immediately
brought the Child Abuse Team. They asked us all kinds of questions
and we were as open and honest we could be since we had nothing
to hide.
The next day they told us that they were going
to keep us there for four more days until they had some answers.
During these days, Morgan had two more seizures because they
had taken her off the IV fluids and she still was not keeping anything
down. A geneticist came in and said that he was going to test
for a metabolic disorder, but he did not think she would have it.
All we could do was pray, and ask everyone we knew to pray for an
answer. These were the worst days of our life. They wanted us
to admit to something, but we didn't know what had happened either!
Finally on January 18, they let us go home, but without
any answers. Two days later they called us and said they may
have found something. It may be a fatty acid oxidation defect and
this is probably what caused my problems during pregnancy, her constant
crying and her so called "injuries." We were glad that we finally
might have an answer.
We went back up to Cincinnati that next week. They
took a skin biopsy to send to Dr. Roe. At this time, they put
her on Carnitor® and a seizure medication. After six weeks we
got the results back. Morgan had GA2 or MADD. At this time
they put her on Riboflavin (she will only take it with caffeine
free Dr. Pepper in a syringe), Polycose powder and a high carbo
diet.
Morgan is now seven and a half months old and all
of her doctors are amazed at her progress. Her eye doctor says
that some of the blood on her retina has disappeared and she is
seeing a lot better. She can now follow objects, pick up objects
and can respond to our facial expressions. The neurologist could
not believe how much better her muscle development was. She can
now roll over, hold her head up and sit up with some support. She
can also stand with support, and they told us that she may never
walk. They never expected her to do so well, but we did because
we knew that we have a God who can do anything! We are thankful
to God for giving us our precious little girl.
Chad and April Jones
Grayson, KY
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