Anna
Hanley
Anna's
MCADD Story
We
had a terrible pregnancy. I was sick 24 hours a day for nine
months and my husband, Jay, had to live with me.
I
was hospitalized four times with severe dehydration and even
went into early labor Christmas Eve 2002 (10 weeks early).
The
Doctor told me not to be like Mary tonight and wait to have
the baby.
Thank
goodness they were able to stop my labor that night.
Due
to the fact I did have such a horrible pregnancy and during
my ninth month I was so weak, the doctors decided to induce
labor a week early.
So,
right after one of the biggest storms to ever hit our region,
President's Day weekend, they induced me. Little did we know
Anna had other plans.
Labor was going well and fast but then Anna decided to turn
her head and got stuck. So, one emergency C-Section later,
Jay and I had the most beautiful and declared healthy daughter
any parent could hope for.
We
were literally tickled pink. We were like all new parents,
happy but sleep deprived. We took Anna to her one week check
up where she was declared "perfect" and healthy.
The
very next day at 7:30 AM we got a frantic call from Anna's
pediatrician telling us her newborn screening test came back
positive for a metabolic condition and no matter what, to
keep feeding her every two to three hours or she could die.
That
is not a call you want to get at anytime but we now realize
this is the call that most likely saved Anna's life. We went
to the Pediatrician that same morning of the call and learned
Anna had MCAD.
Our
poor Pediatrician was stumped because even though he has been
a Doctor for nearly 20 years he never had a case of MCAD (that
he is aware of). He called Children's Hospital Of Philadelphia
right away and they have been monitoring Anna's MCAD ever
since.
It
was a shock and I will not lie to you, Jay and I had many
sleepless nights worrying that she would die of this condition.
We went on the Internet and read the stories about all the
children that tragically died due to MCAD.
I truly think it took Anna's first year for us to realize
how blessed we were that we found Anna's MCAD through her
newborn screening. That the tragic deaths we read about MCAD
were all children who's parents had no idea their children
had MCAD. They did not get that early morning phone call that,
although frightening, saved our daughter's life.
We
now know how often Anna has to eat and we also know what we
have to do if she doesn't eat or is unable to.
Anna
turned 18 months old on August 19, 2004. She has not had a
hospitalization yet and most of the time loves to eat. In
the beginning I resented having to wake a sleeping baby to
feed her, but Jay and I both realized those feedings were
saving her life.
She
is our beautiful little girl and we are so blessed to have
her in our lives. When we tell people that Anna has MCAD and
explain what it is, their first response seems to always be
"but she looks so healthy and normal."
We
always reply "that's because she is healthy and normal
and we were blessed to find out about her MCAD so early in
her life."
I
sometimes add, "she just can never go on Survivor and
the Atkins diet is probably not a good idea either."
She
is a special little girl and we are so greatful to have her
in our lives.
Cheryl
and Jay Hanley
(parents of Anna; born February 19, 2003)
