To our dear family and friends,
Thank you so much for standing with us in prayer, especially yesterday while we were at our appointment. It has taken us some time to digest what we heard, but are finally prepared to let you all know what we were told.
It turns out that Joshua’s encephalocele cannot be repaired. He is not expected to live more than a few hours to a few days after birth. We were led to believe a much more optimistic scenario when we spoke with the doctors at the other hospital, but none of them had operated on, or been in close proximity to, a large posterior encephalocele like Joshua’s. They were apparently misguided in their optimism.
Joshua’s body is measuring fairly close to target at 36-37 weeks, but his head has not grown since 22 weeks. This means that the top of his skull only measures 5cm across, when it should measure 8-9cm. This means the circumference is closer 15cm, rather than the 28cm it should be. The brain tissue present is not “good brain tissue” and although it appears to be there, it’s not going to do it’s “job”. Even if the brain tissue was “good” it would not fit back into his skull cavity.
Before we’re encouraged to seek a second opinion, let me assure you that four specialists from two hospitals conferred on Joshua’s case yesterday and all four came to the same conclusion. We saw a fetal medicine neonatology specialist (specializes in high risk pregnancies), a pediatric radiologist, the lead pediatrician, and the pediatric neurosurgeon from the two best hospitals in
We have been told we may birth wherever we like, in reference to the four hospitals in reasonable distance from our home. We have not made a decision in this respect as of yet, and have not made a decision as to the length of time we will wait for him to arrive. The doctor warned us he may go overdue, but we don’t know that for sure. There is a large risk of stillbirth now, and we are very concerned about this. We’ll make our decision based on what’s going to give us the most time with Joshua before he passes away.
*An uncomplicated, natural birth for Susie
*Joshua will live through birth and for as long as possible, so we can spend time as a family.
*Wisdom in deciding the mode, location, and timing of Joshua’s birth.
*Wisdom to decide if we should let Oceana see Joshua.
*Peace in our marriage, our family, and our hearts.