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MCADD = Medium Chain Acyl-CoA Dehydrogenase Deficiency



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





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