Liam James, Our Superhero
October 27, 2015
By Tracey S.
I’m married to my high school sweetheart. We’ve been together blissfully for over 10 years. In December 2012 we were ready to take the leap to begin “trying” for a family. We’d always wanted children, but wanted to wait until we were married and had a home.. Our first pregnancy resulted in a miscarriage after 8 weeks.
We were shocked but stayed optimistic. As soon as we were able, we tried again. I became pregnant again in July 2013. Everything was perfection. My symptoms were minimal, he was active, we took belly photos, decorated a superhero nursery for our expected baby boy. Liam James was born on March 25th 2014.
He too was perfection. Everything we anticipated for years was finally true. However, after a very long month in the NICU, and a very short month at home, Liam passed away after 65 days with us. His story, and his life has changed and united so many. His memory lives on through so many people, photos, and keepsakes. He was and forever will be our first born, our beloved little superman. What we did not know is that Liam had IIAC/GACI (Idiopathic Arterial Calcification of Infancy/ Generalized Infantile Arterial Calcification.) He had a high CRP since birth and some quick breathing. He stopped breathing on the day he was born. They were able to revive him and monitored him in the NICU.
They couldn’t find any indication of anything wrong, so they sent him home and we continued to take him to see specialists to see why his CRP was so high. It wasn’t until after he passed from cardiac failure that the autopsy showed signs of calcification in his arteries. We used a sample from him to do DNA testing and confirmed that he was affected from IIAC. My husband and myself also did testing and confirmed we were both carriers for this nightmare. Theres less than 200 cases ever reported in the world.
The chances that we are both carriers for this condition is less than 1%, but we are. We’ve tried to conceive since Liam, but that resulted in another miscarriage and our latest pregnancy we were forced to terminate because genetic testing showed us that he too had the same disease. Our insurance wont help us.
They don’t recognize situations like this. I feel that SINCE this affects such a small number of people it should be easy and obvious for us to receive some type of assistance to pursue a living healthy family.
My blog features the journey step by step. Im happy to help and raise awareness in any way that I can.
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