Since my original post about Sam’s condition, we have received an overwhelming amount of love and support. It is crazy to think that people we’ve never met are loving and praying for us and our son. We don’t deserve it, but we’re so incredibly grateful. Because so many are now following our journey, I thought I’d answer some frequently asked questions here.
What in the world is “alobar holoprosencephaly”?
First off, please don’t google it. I say this in love- just don’t. You may see images that you’ll really wish you hadn’t. Basically, holoprosencephaly (HPE) is a condition where the brain doesn’t divide properly during the first few days after conception. This causes a myriad of issues, including facial deformities and other functional defects. Sam’s particular defect is considered the most severe form of the disease. Statistics state that 97% of children with HPE don’t survive pregnancy. Those that do usually pass shortly after birth, due to the inability of the brain to regulate breathing & other crucial bodily functions. HPE is commonly associated with some other sort of genetic malfunction or syndrome- typically Trisomy 13. Sam, however, tested negative for this; the HPE is the only anomaly/deformity that they found during Sam’s ultrasound and MRI. So for the moment, the cause of Sam’s condition is a mystery.
Also, because Sam is basically on “life-support” while he is in my womb and therefore doesn’t require the ability to breath or create hormones of his own, he is still very much alive. He finds joy in kicking and poking me often just to prove it 🙂
What’s your plan?
Basically it’s a waiting game at this point. My OBGYN (who is staunchly pro-life) has encouraged me to treat this as a normal pregnancy, despite the expected outcome. He cannot tell us whether Sam will make it to term – that’s in God’s hands at this point. I will, however, have slightly more scans and follow up appointments to mitigate any possible risk to myself. Those risks, however, are slight and not all that different than the risks of any other pregnancy. We will have more follow up with a genetic counselor, but that will be in the future.
How can we help??
Honestly, pray. After Sam is born, we would love and appreciate any of the normal assistance given to new parents. But for now, we are trying to maintain some sense of normality as we attempt to come to terms with what very well may be our new reality. Pray for grace, strength to be the parents we are called to be to our sweet Sophia Grace despite our personal struggles, perseverance in the faith, and, when the time comes, the endurance to birth & love our son unreservedly.
Oh & we also never say no to coffee and conversation 😜
Can I share this post/photo/blog entry/etc?
If it pertains to Sam and this blog- YES! And thank you!! My prayer is that Sam’s story could encourage even just one person to love Jesus more. Maybe it could even convince a woman considering a medical termination after a diagnosis like this to choose more time with her little one. Even if that means sharing the raw & ugly parts of our journey with the world , it’s worth it!
I think those are the main questions I have received. If you have any different questions, feel free to ask.
With Love,
Kelsey
Miracles Enough 