MCADmom Introduction
Hi, my name is Stephanie. I'm a proud mother of three beautiful little girls. Analese is four years old, Isabella is two, and Dharma was just born on December 17, 2012.. When I had Analese I had all of the fears that a new expectant mother has. Everyone told me it would all be fine and I would have a beautiful healthy baby with no complications. They were right! I had Analese Debra on May 22, 2008. She had 10 fingers, 10 toes, and 2 eyes! A perfect baby!!! All her tests were great! When I brought her home I didn't realize how lucky I was going to have it. People are amazed when I tell them that Analese came home sleeping eight hour nights and rarely cried! I was by far the luckiest mom in the entire world!
Being so lucky with Analese made me be a little too laid back with my second pregnancy. The doctors appointments were all very routine. Rather then being in an appointment for over an hour with numerous questions like with Analese, I was zipping right out of them in 15-20 minutes with a know it all attitude. This of course was no new territory for me. I had assumed that my bundle of joy in the making would be just like Analese, sleeping through the night, not fussy, and would eat well.
Isabella Dorothy was born on November 12, 2010. I was right! She was just like Analese! Eager to eat and even slept well! At 2 days old she seemed to be getting irritable and getting sick on my breast milk. I wasn't even sure how much she was getting. I, at the time was upset that I was failing at breast feeding and had to switch to formula. This was a choice that had upset me at the time but later I must admit relieved me. As soon as she began the formula she settled down and went right back to sleeping her long nights! YAY! Perfect baby right?
When Isabella was 11 days old I received the news that on her newborn screen it appeared as if she had a rare genetic condition called MCAD (Medium-chain acyl-CoA dehydrogenase deficiency). This is a condition that prevents the body from converting certain fats to energy, particularly during periods without food. I was told that although it wasnt certain that she had this without any further testing to start treating her as if she for sure had it. This required every 2 hour feedings night and day to avoid fasting. I was told a terrifying thing next...if I didn't abide by these eating guidelines she would be at risk for serious complications such as seizures, breathing difficulties, liver problems, brain damage, coma, and sudden death. This is not what any new mom wants to hear. This of course had me panicking over the prior 11 days that she had slept 8 hour nights! Could I have done any damage to my baby? Thank goodness no. She was still a healthy baby, but things drastically needed to change to keep it that way.
After more testing it was confirmed that Isabella did indeed have MCAD. Luckily at 4 months old she was able to span out her feedings to 3-4 hours rather then 2. By 6 months old she went 4-5 hours and now at a year she can finally go 8 hours, which she will probably go for a good long time at this stage. The diet isn't easy either. She has to stay on a high carb and low fat diet . She must avoid any medium chain fatty acids such as coconut oil or palm kernel oil because she cant break them down. This has taken some getting used to. With Analese we were able to just pop some chicken nuggets in the microwave and throw some boxed mac n cheese on the stove. This is not so for Isabella. It is probably better for our family in the long run since we eat much better then we used to now, but it still has been a major adjustment!
We have had our fair share of Emergency room visits and hospitalizations. For Isabella a simple stomach bug, flu, or even cold can become deadly and requires hospitalization. We have had many scary times with her and many periods of no complications. I feel so blessed to say that right now she is a wonderful, healthy, beautiful two year old.
Dharma Rae was born on December 17, 2012. In every single way she was different from my other two. She was much bigger at 8lbs 8ozs. She was very strong and alert for a newborn. In the back of my head maybe I was a little too confident that she would not be affected. I chose not to have an amnio and instead to just treat her as if she had MCAD until receiving the newborn screen results. At 6 days old we received a call saying her screen showed MCAD. I was upset all over again. She still needs to be screened a second time in hopes of her being cleared. Until then I am at least relieved that this time I am armed with all of the information and knowledge I need to care for her.
I learned through her that sometimes life hands you the unexpected and you have to learn to adapt. I also learned not to get too over confident. We dont want to believe that something like this can happen to us but it can. This lesson is a valuable one for us. Just like now in our lives, just because Isabella is doing well at the moment doesn't mean that we shouldn't be aware and careful of the disorder. Just as she is doing good today she may not be tomorrow.
I wanted to start this page for Moms like me, who receive this news and are confused. This is for all the moms up every 2 hours who feel like they are alone. This is for all the moms who read every nutritional fact and ingredient list while you trying to simply grocery shop. This is for all the moms sitting in a hospital chair next to your precious child. This is for all the moms like me!
*I am not a professional, just a Mom writing about my family's experience with an MCADD child. I write about my child specifically and do not mean to classify all MCADD kids together. All kids are different and can have different symptoms or severity. I by no means am giving any medical advice in my blog, just out experience. If you want to make any changes in your child s health care or have any questions please make sure to consult with their doctor. Hope you enjoy the blog!*
Being so lucky with Analese made me be a little too laid back with my second pregnancy. The doctors appointments were all very routine. Rather then being in an appointment for over an hour with numerous questions like with Analese, I was zipping right out of them in 15-20 minutes with a know it all attitude. This of course was no new territory for me. I had assumed that my bundle of joy in the making would be just like Analese, sleeping through the night, not fussy, and would eat well.
Isabella Dorothy was born on November 12, 2010. I was right! She was just like Analese! Eager to eat and even slept well! At 2 days old she seemed to be getting irritable and getting sick on my breast milk. I wasn't even sure how much she was getting. I, at the time was upset that I was failing at breast feeding and had to switch to formula. This was a choice that had upset me at the time but later I must admit relieved me. As soon as she began the formula she settled down and went right back to sleeping her long nights! YAY! Perfect baby right?
When Isabella was 11 days old I received the news that on her newborn screen it appeared as if she had a rare genetic condition called MCAD (Medium-chain acyl-CoA dehydrogenase deficiency). This is a condition that prevents the body from converting certain fats to energy, particularly during periods without food. I was told that although it wasnt certain that she had this without any further testing to start treating her as if she for sure had it. This required every 2 hour feedings night and day to avoid fasting. I was told a terrifying thing next...if I didn't abide by these eating guidelines she would be at risk for serious complications such as seizures, breathing difficulties, liver problems, brain damage, coma, and sudden death. This is not what any new mom wants to hear. This of course had me panicking over the prior 11 days that she had slept 8 hour nights! Could I have done any damage to my baby? Thank goodness no. She was still a healthy baby, but things drastically needed to change to keep it that way.
After more testing it was confirmed that Isabella did indeed have MCAD. Luckily at 4 months old she was able to span out her feedings to 3-4 hours rather then 2. By 6 months old she went 4-5 hours and now at a year she can finally go 8 hours, which she will probably go for a good long time at this stage. The diet isn't easy either. She has to stay on a high carb and low fat diet . She must avoid any medium chain fatty acids such as coconut oil or palm kernel oil because she cant break them down. This has taken some getting used to. With Analese we were able to just pop some chicken nuggets in the microwave and throw some boxed mac n cheese on the stove. This is not so for Isabella. It is probably better for our family in the long run since we eat much better then we used to now, but it still has been a major adjustment!
We have had our fair share of Emergency room visits and hospitalizations. For Isabella a simple stomach bug, flu, or even cold can become deadly and requires hospitalization. We have had many scary times with her and many periods of no complications. I feel so blessed to say that right now she is a wonderful, healthy, beautiful two year old.
Dharma Rae was born on December 17, 2012. In every single way she was different from my other two. She was much bigger at 8lbs 8ozs. She was very strong and alert for a newborn. In the back of my head maybe I was a little too confident that she would not be affected. I chose not to have an amnio and instead to just treat her as if she had MCAD until receiving the newborn screen results. At 6 days old we received a call saying her screen showed MCAD. I was upset all over again. She still needs to be screened a second time in hopes of her being cleared. Until then I am at least relieved that this time I am armed with all of the information and knowledge I need to care for her.
I learned through her that sometimes life hands you the unexpected and you have to learn to adapt. I also learned not to get too over confident. We dont want to believe that something like this can happen to us but it can. This lesson is a valuable one for us. Just like now in our lives, just because Isabella is doing well at the moment doesn't mean that we shouldn't be aware and careful of the disorder. Just as she is doing good today she may not be tomorrow.
I wanted to start this page for Moms like me, who receive this news and are confused. This is for all the moms up every 2 hours who feel like they are alone. This is for all the moms who read every nutritional fact and ingredient list while you trying to simply grocery shop. This is for all the moms sitting in a hospital chair next to your precious child. This is for all the moms like me!
*I am not a professional, just a Mom writing about my family's experience with an MCADD child. I write about my child specifically and do not mean to classify all MCADD kids together. All kids are different and can have different symptoms or severity. I by no means am giving any medical advice in my blog, just out experience. If you want to make any changes in your child s health care or have any questions please make sure to consult with their doctor. Hope you enjoy the blog!*