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MCADD = Medium Chain Acyl-CoA Dehydrogenase Deficiency


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)





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