Semilobar Holoprosencephaly

Derek and I got the results of our MRI yesterday. Our baby girl does in fact have Semilobar Holoprosencephaly. Derek and I had been expecting this to be the outcome for the last couple weeks, so when we heard it on the phone, and it was actually confirmed, it was a lot easier to take in than  I previously thought it would be.

What this basically means is that, within the first 28 days of pregnancies, the child's brain is supposed to divide into two complete hemispheres. Our baby's brain partially divided, but not all the way. Holoprosencephaly can manifest itself in four different forms, and the one that our baby has is the second most severe.

Most often the mother's body is able to pick up on this defect and it causes the woman to naturally miscarry the baby at some point during the first trimester. Clearly, my body didn't do that, but there is a high chance this baby could be stillborn before my due date, or I could go into labor any day, or I could make it full term and have a normal labor and delivery.

Looking forward after birth, this baby could live anywhere between a few hours to a few months. Because our baby does still have hydrocephalus, this adds more complications and adds to a poorer prognosis looking forward.

There currently aren't any major surgeries or anything that doctors can do to correct this problem. They can use ventilators, and feeding tubes, and loads of medications to lessen the effects of diabetes and seizures that these babies commonly endure, but Derek and I are hoping to be able to take our baby home from the hospital as soon as we can in hopes of just letting her live as peaceful of a life as she can without the burden of machines and medications that ultimately will do nothing to improve her quality of life. 

Derek and I are so grateful for the choice we made to be married in the temple and for the covenants that we've made. Because of this we know that our daughter will automatically be able to go to the Celestial Kingdom when she does leave this earthly life, and that we will get to raise her again someday. I seriously don't know how people can endure trials like this without the comfort and knowledge that we have about the Gospel. We're so lucky to know what we do! 

While we do have the comfort and knowledge of the Gospel, it doesn't take away from the fact that we are going to be saying goodbye to our daughter at some point, which is hard and difficult. It's hard to simultaneously be planning a birth, and a funeral at the same time, but we're grateful to know that, "All that is unfair about life can be made right through the Atonement of Jesus Christ".  

We have an appointment on Thursday to follow up with the doctor, learn more of what to expect for our particular case, and hopefully set some plans for labor and delivery and an actual induction date so that our families know when they should tentatively expect to come out and everything. We'll keep everyone updated as best we can! Thanks again for all the thoughts and prayers that have been sent our way during this time, we appreciate it more than you know!

** UPDATE 1/31/2015**
I recently realized that when you type in semilobar holoprosencephaly into Google, this blog post is among the first couple posts to come up in the search results. It makes me happy to know that when people get this diagnosis they can easily find this blog. 

For those of you finding yourselves here for the first time, our experience with this birth defect was miraculous. We have been so blessed over the last five months. Our baby is home, healthy, and spent only one day in the hospital post-birth. The doctors to this day keep telling us if they did not have these MRI results they would never have known there was anything wrong with our sweet baby.

I know that our experience is far different than 99.9% of the families going through this, but I hope that you can find faith, hope, and strength through our story as you embark on your own journey. 

Feel free to navigate through the posts listed below where you can read the posts that lead up to this one, and the the posts that occurred through the latter end of my pregnancy, and the ones dealing with our daughters birth, and her monthly updates!

Posts Written Prior To This One:
An Uncertain Diagnosis: Ventriculomegaly
This is our Trial
Baby Girl Update

Posts Written After This One:
Final Thoughts on Pregnancy
The Birth Story
Em at One Month
Em at Two Months
Em at Three Months
Em at Four Months
Em at Five Months
Em at Six Months
Em at Seven Months

Em at Eight Months

Em at Nine Months
How I Survived My Pregnancy + Em's New Diagnosis

Em's First Day of Physical Therapy

Em at 10 Months