The Blog - HIE and Microcephaly

Monday the 13^th was a rough day. At the end of the day I had a free minute and googled “HIE and Microcephaly”. I wasn’t looking for any medical stuff, I wanted to see a blog and what people said and how their kids turned out.

One result was a blog post that had both terms in it. As I read the post I choked up because it WAS us, not to mention the baby looked a lot like C. The mom wrote about how her baby girl’s head was under 4% which is considered microcephaly. And how she had done all this research and saw good and bad things. She then found mom’s whose kids who had microcephaly who were totally normal later in life or that their heads were small at 4 months and then jumped back up at 6 months.  How the pictures she saw she thought “that isn’t going to be my baby”. How she would anxiously look at her head to see if it look larger and thought it did. That her kid wasn’t going to be one of the cases of microcephaly, she might have a smaller than normal head but that was it.

Then I looked forward, I wanted to see if her daughter did end up “normal”. She has cerebral palsy and is in a wheelchair. I totally freaked out, I couldn’t breath and it was a total panic/anxiety attack coming on. I feel it in my chest again as I write this. Luckily I have become pretty good at holding back tears and it was also about 4:55pm. So I grabbed my stuff and snuck out quickly before I had to talk to anyone and die. I got my car and sobbed, sobbed tears and sobbed to catch my breath and breath. I got home and sobbed as I told Scott about it. That night I thought more about it and sobbed. Was my C going to end up with cerebral palsy and be like her? Well the doctors seemed concerned but the neurologist who should have an idea what to expect laughed off the idea of her brain atrophying. We knew CP was a possibility but C had been doing so well with therapy, some things she is totally on age for while others like neck control, hands open, deliberately moving her arms, she is definitely not normal at.

I thought about linking or quoting the blog post that I read here, but feel guilty that when I read it and my reaction was that it would be the end of the world if C turned out like her daughter. We felt like she could be behind, maybe a few grades, but she would walk and talk and sit and maybe she wouldn’t go to college but someday she would end up meeting someone and getting married. If she ended up with that level of CP, she would live at home forever, not be accepted as normal in society, and never fall in love and get married.

C has her MRI, she did fine with the sedation. And now we wait. Until the following week for the results.