Ryan and I have received devastating news about our baby. We are wheeling and trying to find some way to accept and prepare for the path ahead of us.
We found out that she has a chromosome disorder called Trisomy 18 (or Edwards syndrome). Trisomy 18 is fatal, with two-thirds of the babies not making it to term and 90 percent of those that do typically live no more than a few months.
In the ultrasound we have seen that she has brain, heart and kidney deformations along with a couple other markers for Trisomy 18. The amniocentesis confirmed the diagnosis and she does indeed have 3 number 18 chromosomes. One other key thing is that Trisomy 18 babies have a susceptibility that healthy babies don't. That is, they succumb to things that would not be fatal to a healthy baby. This means that fixing some of Kayla's problems would not be helpful to her because the Trisomy 18 itself is not fixable.
We have decided to love her while we have her and try to make her time here as comfortable as possible.