On January 6, 2009, my world as I knew it had changed. I gave birth to my baby girl Kelli Elizabeth. Being blessed to find out that I just had a little girl was exciting. Family and friends came to see her and then my world fell apart. The day after Kelli was born everything fell apart. As Kelli was being layed down for her hospital photo, she started choking and stopped breathing. The nurse ran in to help and the words a mom never wants to hear was said. The nurse said "Pull the Code Blue!" My heart sank as I pulled it and ten nurses ran in and took my daughter away. Running to try to revive her as I sat in the hospital bed waiting to hear if my little girl was ok. Having my mom and sister there with me and seeing the same fear in their faces, my heart sank. Finally the nurse came back to let us know that she was in the nursery and doing ok.
The next five days was rough, Kelli went between the NICU and Special Care Unit. Thanks to the hospital I was given the bonding room in order to stay at the hospital with her. They also would come get me every two hours for me to go and feed her. Being able to hold her again and bond with her was the most amazing feeling. Family could visit with me but couldn't hold Kelli, unless it was the grandparents. On the sixth day we were finally able to take Kelli home.
Following the hospital suggestions we took her to the pediatrician asap. They then printed out a paper and said "In case she has this follow the instrutions." In reading the paper we noticed it was for a fatty acid disorder called VLCAD. Through the newborn screening we learned that Kelli had the rare genetic disorder called VLCAD. We then had to follow certain steps in her care and any sickness was an immediate hospitalization.
Kelli is now two and has been hospitalized twenty-eight times with one emergency surgery. We live day to day not knowing what it was going to bring for her.
On July 21, 2010, I was blessed with a baby boy David. For David, I had to take certain steps just in case he had VLCAD as well. Besides the newborn screening there was extra blood work ordered to find out if he had VLCAD too. Due to Kelli coding on me, we found out with her disorder she wasn't suppose to fast, because I breastfed with her we found out that the first three days while the milk is produced the baby is fasting. Therefore for David we substituted a special formula just in case. We finally were given the news that David was just a carrier of VLCAD and could go to regular formula.
Thanks to the newborn screening my babies are alive and doing well. Having the expanded newborn screening has been a blessing to my family and saved my daughter!! I am now going to fight to have these expanded newborn screenings in every state and become an advocate to make mom and dads aware. It was difficult for me at first because going to medical school I never learned of the disorder Kelli has and therefore I am furthering my education to be able to do more. I am currently enrolled to get my BA in Health and Human Services, in order to have the resources to raise awareness and money to find a cure for rare diseases. This is not just for Kelli but for all others with rare diseases.
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