Microcephaly: A New Twist in our Journey

A few weeks ago my daughter, Sage, was diagnosed with microcephaly. It essentially means that her head is measuring more than two deviations too small. Microcephaly is a neurological disorder and there are a lot of different reasons why this can happen and a wide variety of problems it can be associated with. Our pediatrician recommended blood tests and an MRI to try and determine the cause and extent of the issue. So far the blood work has all come back normal and we have yet to do the MRI. We've also seen a neurologist and been referred to a geneticist. As we've learned a little more though, it seems likely that we will never know a cause or, in advance, how it might effect her. It also seems likely that she will have some developmental delays of some sort. They could be mild delays or severe delays, they may show up right away or not for a while, and at this point it seems we have no way of knowing.

I honestly feel weird writing about it, since I don't feel like we really know anything. All we really know is that she's measuring at 2.4 deviations and that there's a good chance she will have some developmental delays, although there's also a chance she could grow up without any noticeable delays at all. We just don't know.

In some ways I've been really thankful that we found this out right in the middle of a move, when there's lots to do and not much opportunity to stop and think. The little research I've been able to do has made me realize that maybe its better for my psyche if I don't do any at all. It's hard to feel so helpless, though, and to live with this constant unknown.

I love my little girl so much. We bonded so much more quickly than I did with my son. I look at her and my heart melts. I can't imagine my life without her and have already sort of forgotten what life was like before she was born. I want her to have a wonderful and full life. I don't want her quality of life to be diminished because of this. I don't want her life to be more difficult because of this. It breaks my heart to think of all of the what-ifs and how this may affect her over time.

And then she locks eyes with me and smiles and I know that whatever comes we are going to be ok. My beautiful little girl will always be my beautiful little girl. And I feel ready to face whatever comes, together, as a family.

Rejoicing in the journey - Bethany Stedman