You may have read Alena's story before on my blog, or at another site - just in case you are not familiar {and are interested} here is our story again. For the full story please click on this link, in a nutshell at 6 days of life Alena's Newbornscreening test came back positive for Classic Galactosemia. We were already in the hospital, the diagnosis came in, she was taken for a spinal tap, and by the next morning E.Coli had grown in her spinal fluid. She seized, was transferred to the PICU {Pediatric ICU} where she was diagnosed with E. Coli Mengengitis which can {does not have to be} a effect of Classic Galactosemia, and the baby's exposure to Galactose {at least that is how I understand it - I am a Mom a layperson so double check with your physician}. As far as I understand it is not understood why some babies with Classic Galactosemia develop E. Coli Mengengitis. Let me just say that was THE worst moment of our lives. We are so thankful for the Newbornscreen because without it Alena would most likely not have survived.
Now, what does this have to do with a song? Well, Ron {my dear husband} makes New Years Resolutions {unlike me} and his 2012 goal was to write one, and publish one song a month. Congratulations, Ron because you did it yay :) - I am not off topic - really just bear with me....for the December song of 2012 Ron put his recollection and memory of this frightful event into words. You know, unlike me, he really does not like to talk about that time. I am so glad he got it out - it is a song for me, for us, for our kids, and also to tell the world about the importance of Newbornscreening. In his song, he put our fears into words and beautiful music. It brings me right back to that time and yes, it makes me cry....and yes, we are the lucky parents because our child survived. Both of our children are alive because of Newbornscreening...Please share our story with your friends, those that are expecting babies, or those who just like to listen to music.
Yes, I write about this topic sometimes. Are you tired of it? If you want to stop reading, go ahead but please tell all your friends and family who are looking to welcome a baby into their lives about this test. Some people call it the PKU test {for the metabolic disorder PKU}, others call it the "heel prick" but it's official name is Newbornscreening. This topic is not about whether you agree with me or not. It is not about whether you like me or not. This is about saving the lives of babies. Plain and simple!
Newbornscreening tests infants born in all 50 States for a wide array of disorders that if not caught in timely manner can end up debilitating, or deadly. Not every State tests for the same disorders, so it is very important to know before the baby arrives what exactly is tested and if maybe an additional screen should be considered. The Screen Babies Foundation - an all volunteer organization of Mom's who have been touched by newbornscreening - has valuable information. Find answers to your questions, and find out what disorders your state tests...
So just in case you do not know, I am so passionate about Newbornscreening because both of our children are healthy today only because of the Newbornscreen. I did not know about the test before Alena our oldest daughter was born. But then again I also had never heard about Classic Galactosemia, the metabolic disorder both of our children have. Click on this link to read our story. We have two happy stories, there are more happy stories such as Nikki's, Damian's, Alex's and many more. But unfortunately there is a long number of stories that did not have to end so sad.
Read Cora's story - Pulse Ox Screening could have saved her Alexis could have been saved if newbornscreening had detected her MCADD Ben could have been saved if his MCADD would have been detected by Newbornscreening
