He will grow out if it?

This comment comes out of everyone's mouth when we try to explain MCAD to family or  close friends. While this sounds amazing, unfortunately he won't. So I always explain it another way and tell them briefly about how Zion got two mutated genes one from me and one from pat...and those genes cause the way Zion's body metabolizes fats to energy. You use energy constantly, just walking and him as a baby crying burns energy. Yes one day he will be able to go "regular " lengths between feedings but say he was playing outside for an hour in the summer, the heat plus using energy from playing...he would be running on empty and would need a snack. 

  Some frequently asked questions I get are, will he be prone to obesity? No, just like any child he should eat healthy! And I have him on a heart healthy diet. His body doesn't metabolize fats well so fried foods are not good for him.

💙Z

Future

When Patrick and I lay eyes on our sweet baby Zion it's hard to believe that something is wrong with him and that it came from us. Our future children if we choose to have more will have a 25% chance of having MCAD too... When speaking to someone about Zion's disorder this weekend I was told not to have other children due to putting someone on this earth with this disorder knowingly...and it would be too much stress on me and Patrick. I was quite shocked...trust me this thought has gone through  everyone's head when they have a child with a genetic disorder. If my child came out with MCAD, he was meant for me...and if my future children do they were meant to also. God doesn't put anything in our path that we cannot handle. I am prepared and on alert with Zion and I can be for our future children.💙

Over protective?

When explaining MCAD to people, sometimes I feel like people look at me like i'm over protective and that everything will be okay. It is a hard concept to understand that my perfect, normal looking child is okay. What does a Fatty Acid Oxidation Disorder look like? It looks just like you and me...
When people see me I probably always have my baby attached to my boob...I hear your feeding him too much, why don't you try to stretch him?, and so on. It takes energy when your body temperature goes up and down. So when my baby goes from in the house then,when he gets in the car sweats in his car seat,gets out and back in the house...he has used a lot of energy and already used up quite a bit.
So how does MCAD look?

Awareness

July is fatty acid oxidation awareness month, MCAD isn't the only metabolic deficiency out there many children suffer from some worse then Zion. Remember those who we have lost, and grieve for their parents. Make awareness for this silent disease.

Newborn blood screening saved our Zion's life...

As I had mentioned before we found out Zion could possibly have MCADD when he was 5 days old...we came home from the hospital with a perfect baby boy at 4 days old. He had a doctors appointment at 5 days old just to get an extra weight check in because he had lost more than 10% of his weight. Doctors looked at him and said he was doing just fine and looked perfect. Later that afternoon we get a call from our primary care physician's office explaining that from the newborn blood screening that gets sent off to Raleigh, that they had seen an abnormality in his blood work'. She had explained from what she was told by the specialist in Chapel Hill, and said that he is not to go past 2hours of not eating. Later that day the metabolic specialist called us from UNC Chapel Hill children's hospital, explaining more what MCADD is. All I was thinking how could my perfectly healthy newborn have this? What is this? How did he get this? Why me and his daddy? He looked perfectly healthy. I was reassured he didn't need any special formulas or diet for now and to keep doing what I was doing and that the breast milk is what is best for him. I was also reassured that he would be perfectly normal besides getting hypoglycemic faster than most people would. We had an appointment scheduled to go to Chapel Hill Children's hospital to learn more about MCADD and to get more blood work taken. We came with questions and learned more and more about MCADD. We learned that for the 1st year of his life he would need appointments every 3 months. Then from then on yearly for the rest of his life. 

Our 1st scare...

Zion came out a healthy baby boy, and it wasn't until he was 5 days old when his newborn blood screening test came back from being shipped to Raleigh(something they do with all babies to look for abnormalities) that we figured out he had MCAD. If we had known in the hospital  and we knew the signs...we would have reacted very different when he had his first episode. He had his circumcision at 3days old he came back from his procedure and went right to the breast just fine. Nurses said it would be normal if he slept a little longer due to the procedure. He did sleep longer than he usually did but to most moms it wouldn't be a big deal. I had tried waking him up to eat because I was having mother intuition that he needed to eat he suckled for probably ten minutes...I felt a little satisfied and let him lay back down. My mother kept reassuring me that he was okay and babies know what they need, which they do. After dinner he started to not even wanting to latch he had such a hard time he became frustrated every time he tried to eat...my night nurses were no help mad I was still recovering from my csection. He would wake up every three hours or so and I'd try to feed him each time, we still had no luck. He soon became lathargic and very sleepy. Most children's bodies could handle going threw this Zion's body started to eat what little stored fats he did have. He soon lost more than 10% of his weight...luckily he was a big baby and he did have storred fats, because from what we know now he could have past away on us. Early that morning the lactation nurse came in and we pumped two small bottles and after those two feelings we had our baby back. From the moment Zion was born he was a fighter, and I know he will keep fighting.

Breastfeeding and MCADD

Zion exclusively breastfeeds, it sometimes is very hard on momma because of his MCADD I have to make sure he eats every 2 hours since his body is so little for now until his genetics doctors in Chapel Hill say so he cannot go longer than 3 hours to eat. In them night I have constant alarms set to wake up and wake him up to feed. He takes one to two expressed milk bottles a day mixed with his carnitine, an amino acid his body uses(all our bodies use this) to dispose of them fatty acids that get stuck in his medium chain of fatty acids. If his body does not have this amino acid he will become deficient since he uses it way more than we do.

About MCADD.

For those of you who do not know, Zion was diagnosed with MCADD. He will be a normal healthy child and be able to be active..he just can not store the fats that most people store to be able to go without food for long periods of times. The only things we have to be very careful about is when he gets sick (throwing up, diarrhea)  he will have to be admitted into the hospital and put on intravenous fluids since his body cannot hold fatty acids. He will have this for the rest of his life, it is a genetic mutation which he received from a recessive gene from Patrick and I. http://ghr.nlm.nih.gov/condition/medium-chain-acyl-coa-dehydrogenase-deficiency