Why does this happen? What are the chances of recurrence?
Craniosynostosis is most often sporadic. In some families, craniosynostosis is inherited in one of two ways:
- Autosomal Recessive
Autosomal recessive means that two copies of the gene are necessary to express the condition, one inherited from each parent, who are carriers. Carrier parents have a one in four, or 25 percent, chance with each pregnancy, to have a child with craniosynostosis. Males and females are equally affected.
- Autosomal Dominant
Autosomal dominant means that one gene is necessary to express the condition, and the gene is passed from parent to child with a 50/50 risk for each pregnancy. Males and females are equally affected.
So what does this mean for us?
Hudsons kids (I know way far away right now to think about) have a 50% chance of having cranio.
I have read we anywhere from a 2-50% chance of having another cranio baby depending on genetics.
We can do genetic testing to see if this was just a chance occurrence. Honestly I don't know how I feel about doing testing. If I knew that we have a 50% chance of recurrence would I rethink expanding our family based on a percentage point? What percentage does anyone have that their baby is going to come out perfectly "normal"?
I know now more than ever there is never a guarantee that when you have a baby it will be 100% healthy. In fact now I am starting to be amazed at how many kids end up completely "normal" with all the things that can go wrong. Its a good thing I am not in the medical field or I would be a nervous wreck knowing all the possibilities. The fact is, I know is how lucky we are that this is so treatable and we caught it so early.
You can't live your life in fear of the what ifs. Life is not supposed to be perfect and neither are we. I just hope to raise awareness as much as possible. I hope awareness will encourage more research for Hudson, our family down the road, and every other beautiful cranio baby.