I've debated on how to write this blog entry because it’s a topic so personal to me.Saturday night, just before midnight, my sweet little eight week old nephew Barron Christian Battles passed away. He died peacefully in my sister Magdalena's arms and next to his dear dad Justin.
Barron was born a beautiful healthy baby boy with blond hair and bright blue eyes. He was the sweetest, so content and you could tell he just absorbed everything around him. It wasn't until he was four weeks old that his health started deteriorating and he was transferred to a Marshfield hospital where they started testing him for everything. It was discovered he had a genetic disorder called Spinal Muscular Atrophy Type One. SMA is actually not that uncommon, but, there are varying degrees and Barron had the worst kind. Some studies say one in sixty people are carriers of the SMA gene. Usually for a child to get it both the mother and father have to be carriers. There is no cure for SMA and the earlier the onset the shorter the life expectancy. Some people show symptoms as adults and live normal lives, others like Barron only live weeks. Here's more information about it: http://www.smafoundation.org/
My sister and her husband are experiencing the unimaginable, having to bury their first child. To go from thinking you have a perfectly healthy baby then weeks later holding your baby while he takes his last breaths…it makes me cry thinking about it. I could go into all the stories of heartbreak through all of this like when Magdalena, Justin and Barron were at a hotel in Minneapolis and Barron went into full cardiac arrest. Justin had to perform CPR on his six-week old baby until paramedics arrived. He saved his life. There has been so much joy though too. Justin and Magdalena would play, sing and read to Barron all day and get huge smiles from him. You could tell he just adored his mother and father.
Through this whole process we are so thankful for the amazing medical teams at Marshfield Hospital, Minneapolis Children's Hospital, the services Caring Bridge and the Ronald McDonald House and all the support of friends and family.
Rachel Pierce
rpierce@myabc5.com
