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Isovaleric Acidemia

June 7th 2005 was one of the best days of our life’s, Gavin James was born and he was perfect! We were in the hospital for the usual few days, Gavin was a great baby and I couldn’t wait to get him home and start our new life as a family. Day 3 of his life we finally got to go home, it was so great to be in the comfort of our house and get settled in, our first night went so smooth and I felt like this is what I was meant to be, a Mommy. After the first night home I was awakened by a phone call in the morning that I decided to ignore because of course I was tired and I didn’t want to wake my husband up. Well a minute later my cell phone rang a couple times so I got up an listened to the message. That message changed my life and everything I thought I knew or understood about raising a child. It was a call from a pediatrician saying that Gavin’s newborn screening test came back positive for something and we had to get to the hospital as soon as possible. So I called her back thinking that there had to be some kind of mistake, there was nothing wrong with Gavin, he wasn’t sick, he was growing just fine and eating normal. When she confirmed that it was indeed Gavin, I lost it. How did I not notice, why wasn’t I able to see that there was something wrong and would if it was too late. I knew it was serious when we got to the U of M and they were waiting at the door for us to take Gavin, that’s when I got scared but realized that at least we were in the right place and hopefully we could get some answers soon as to what exactly he had and what we do from here on out. ​

Gavin was in the NICU at the U of M hooked up to everything you can imagine and had an IV in his soft spot. I remember they took some blood and came back to determine that he defiantly had what was called Isovaleric Acidemia. I thought I was dreaming and thought they would say this was all just a mistake but when they gave him the diagnosis of IVA the panic set in. I’ve never heard of such a thing and started noticing nobody has, they couldn‘t even pronounce it. We started doing Google searches and that didn’t help, I think it just scared us more. The next day I just remember Gavin’s metabolic doctor saying that he doesn’t understand and that Gavin should have been sick but he showed no signs of crisis at all and his levels were fine. I don’t think he had experienced a “mild” case of IVA and that is what we were told Gavin has. 

He was immediately started on Glycine and Carnitine and I was able to keep breastfeeding. A few months of going that routine we ended up stopping the glycine and continuing on with the carnitine and I was able to breastfeed him for 13 months! When he started solids we didn’t have to restrict or keep track of the amount of protein he was getting, I just gave him everything with less protein in it. As he got older he really seemed to self regulate his protein intake and he has ever since. Since birth he has only been really sick a few times of which I brought him to the doctor and his levels have never been high or worrisome. Right now he is our spitfire 31/2 year old, he has more energy than any other kids around and he is so smart. He has not been taking carnitine for almost a year now (except for when he’s sick) and we have not noticed a change in him at all. He is also a big brother to a little brother Kaden and baby sister Raven, whom are both unaffected.

In closing I just have to say that I thank God everyday for that heel prick of blood that I truly believe saved my sons life for what it is today. Without that I don’t even want to bear the idea of what would have been. Thank you all who have been such advocates for newborn screening and our children, you truly have a place in my heart because you have made a huge difference in our lives. 
Callie and Brandon
Chaska, MN

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