David
David's
MCADD Story
After
what seemed like forever, I finally went into labor with my
second child, my son David. During my delivery I had a temperature
that worried the doctors. After breaking my water and seeing
it was "murky" they were even more worried.
I on the other hand was fine. After all, I had a very healthy
little girl at home waiting for her new baby brother. What
could go wrong?
David
didn't cry when he was born. That worried me but they assured
me he was fine and that they just wanted to watch him because
his temp was a little low and I had a high temp during delivery.
He was taken from me after only holding him for a few minutes.
Still, they said he was fine and I knew he would be back soon
to start feeding.
Over
the next 2 days my son was with me a total of 2 hours and
only ate for a total of 30 minutes. He was lethargic, ice
cold, had low sugar levels and breathing problems. He was
placed under a warmer, hooked up to a heart monitor and a
breathing monitor to keep track of his oxygen level. He was
also put on an IV and had 2 spinal taps.
During
the first 2 days he was given 2 bottles of formula to get
his sugar level up. I was not happy. I wanted to breast feed
him but the doctor said it was more beneficial to have the
bottles of formula.
The
evening of the second day he was given to me and stayed with
me for a good while and ate some. The next morning he again
ate some and was tested for sugars and was fine. He was to
be released and could go home.
But
I couldn't leave. They said I needed to be watched because
of the small temp I had during delivery. This made my husband
and I very mad.
The
past 2 1/2 days were all about my son and how he was not doing
well now all of a sudden he's fine but I'm not. We asked to
speak to the doctor because we were going home!
While
waiting for the doctor, they took my son for the last routine
tests and returned to tell me that he was lethargic, ice cold,
had low sugar, breathing problems. He was put back under the
warmer, hooked back up to the heart and breathing monitors
and put back on the IV. They said a doctor would be in shortly
to talk with us.
When
the doctor came in we were briefly told that while waiting
to get the routine test done David's sugar level dropped,
his breathing became irregular and again he got cold. (He
had been away from me for 4 hours with no food and had only
ate a very small amount that morning.)
The
doctor said David's newborn screening test came back showing
he had MCADD and that they would like to retest him. Of course
we said yes.
We
had no clue what MCADD was and neither did the doctor. That
night I was allowed to sit with my son again and hold his
hand but I could not feed him or pick him up.
In
the morning a specialist came in to briefly explain to us
about MCADD. She assured us she would come back the next day
to tell us more.
One
of the student nurses over heard this and, on her own, printed
out what she could find on the Internet about MCADD.
The
next day we got the same information from the specialist and
not much else but by having the information from the Internet,
we were able to ask questions and understand more of what
was happening to our son.
David
was put on Carintor. When the doctor asked if I would allow
another bottle, I said NO. If my son has this thing called
MCADD and part of the "treatment" is frequent feeding,
then stop taking him from me and let me feed him.
I
asked him, "doesn't it make since that if he needs to
eat, I be allowed to feed him every 2 hours rather then them
keeping him in the nursery away from me with no food?"
That's
when things began to improve. I started feeding him every
2 hours and slowly he was taken off the IV. One week after
my son was born he was well enough to go home.
After
being home only a couple of hours with our new baby, our little
girl Kloey, who we had not seen much of the past week, was
taken to the emergency room. We were told she had pneumonia.
Fearing
that the baby might catch it, Kloey went back to her nanny's
for the next 4 days while we went to all of the doctor appointments
that were set up for the baby.
Our
son is now 3 months old. He has his sugar level tested 2 times
daily. He eats whenever he wants but can't go longer then
4 hours without eating. His sugar levels are doing wonderfully
and he is getting so big.
Scary
as it has been, I'm so thankful our son was diagnosed at birth.
My
husband's grandmother lost 2 sons to what the doctors thought
was crib death (SIDS). I'm thinking there may be a connection.
Their
are still days when I fear the worse. I'm not sure that I
will ever stop fearing. I do know now that I need to use my
fear to push me to learning more about MCADD, teaching others,
and enjoying every moment with
my kids.
Brandie
Cole
Mother to Kloey and David Cole
