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


  1. This made me cry! You are so strong and I appreciate your testimony of the Plan of Salvation! You will get to see that sweet little girl again and this trial will be so worth it! This makes her blessing dress even more special. I am honored to help with that and hope you are doing alright! When I get back from Utah, let's hang out :) Love you!

  2. This breaks my heart. Praying for you and your family throughout these difficult days. I hope you experience His peace in each trying moment!

  3. Oh Paige, I am so sorry for the prognosis. I have been praying for you and your family throughout this whole thing, and will continue to keep this in my thoughts and prayers! You are an inspiration for having such a strong heart about this whole situation, I know I could not. God certainly does have a plan.

  4. You sweet girl. I just want to give you a huge hug. What a difficult thing for your family to go to. No matter what, losing a child is heart-breaking.

  5. Having the gospel and understanding the plan of salvation is such a comfort during the most difficult times. The Lord has a plan and although you may not understand now, someday you will. Stay strong and know your baby girl will be with you for eternity.

  6. I'm so impressed by your outlook about this. It can't be hard but your faith and strength is so evident. Those things will be a blessing to your little girl! I'll be praying for you and your family!

  7. Words can't describe the love I have for you and your family! You have been such an amazing example of strength and faith as you've learned the Lord's eternal plan for this little one of yours. I know he will continue to bless all of you with peace. Our prayers of course are continually with you! LOVE YOU PAIGE!!!

  8. Lots of love to you guys. I can't imagine this trial, but I think your perspective is so incredible. That sweet girl is so lucky to have you and Derek for parents, and I KNOW she will touch many people's lives, even if her time is short. I love that you have allowed all your readers to get to know her on your blog during your pregnancy, we all love her already!

  9. I can only imagine what you must be going through right now & it breaks my heart. I don't even know the words to offer comfort - I'm not sure if there are any. Just know that even though we are strangers & even though I will never know your daughter, you are all in my thoughts. I will continue to hope that she's one of the exceptions to the rules. Sending all of my love & support.

  10. Paige, you do have such an impressive perspective and show so much strength and faith, your little girl is so lucky to have you as her mom! My thoughts and prayers are with you and your family.

  11. Paige, my heart absolutely breaks for you. Your courage and strength are so inspiring. Know that you and your family are in my prayers.