Olivia

IVA

It was the summer of 1992; I was getting ready to enter my Senior Year in high school. I was working at a Kiwanis Camp for disabled children and adults when I became so sick. As soon as I got home from working at the camp I saw my doctor thinking I caught a bug of some sort. He said let’s run a pregnancy test too. I was like whatever — I am so careful. Well this 17 years old was told “you are going to be a mom.” I was so sad, scared and not sure how in the world I was going to tell my parents. News was delivered, things became tense…I was pregnant and heading into my last year of school. I tried to hide it. But eventually everyone started to notice. I lost some friends along the way and yet gained others. I turned 18 in Feb, my mom and I were finishing up our last few Lamaze classes and my due date was right around the corner.

On April 7th 1992 I had my beautiful daughter Olivia Leigh. Olivia was an 8 pound baby, seemed very healthy. We were discharged immediately and went home. At this time I lived with my mom and dad. My grandparents were visiting as well. We all started to notice that Olivia was not eating much and sleeping all the time. We called up the birthing center and they said you are just a young mom and nervous. I was told babies sleep it is ok. Another couple of days and Olivia was hardly waking up at all. My mom and I rushed her to the emergency room trying to explain something was wrong. The nurse on duty was my guardian angel and no one knew it yet. Later in the night the nurse came in saying she has called OHSU and asked for them to transport Olivia up to Portland immediately.

The infant caravan came in the middle of the night, told me to go home sleep some and then come up to OHSU. My mom made me go home and try to sleep some. After a couple of hours we headed up to the hospital. By the time my mom and I got up to the hospital they had Olivia hooked up to numerous IVs and no one knew what was wrong with her. They had shared they lost her for a brief moment in transit and was able to get her stable. They were not holding onto much hope.

Two weeks of specialists go by and nothing, then a gentleman by the name of Dr. Neil Buist came into her room smelled her and said she is an IVA baby, Isovaleric Acidemia and what I’m smelling is her sweaty sock syndrome. They tested her and that’s exactly what she had. My mom asked why the PKU test did not alert them and he explained that the PKU testing was limited. Olivia was a part of a news story when the PKU testing was being expanded to screen multiple metabolic disorders.

We were in and out of the hospital her entire life up to the age of 13. She had several crises. Olivia also had pancreatitis and things were just so hard on her. Things got a little better after about her 13th birthday. Hospital visits became less sporadic and our stays were didn’t last as long.

Olivia is now 24 years old she has just given birth to a son and is doing ok. Her pregnancy was very hard, hospitalized a few times and had multiple ER visits. But her metabolic team was so good and worked with her so closely.

For my first child and being a teen parent it certainly wasn’t what I was hoping for but with the help of the metabolic team and my family Olivia is still with me and I love her deeply.
thanks for letting me share

Karrie, mom to Olivia
Silverton, OR
brownkarrie74@yahoo.com