The Journey from Here
It’s been a while since my last post and a month since the news that totally shattered our world.
As we’ve had some time to reflect, I wanted to share an update on where we’re at now and where we go from here.
Honestly, it’s been hard to talk about with others. Partially because it’s so painful, but also because it’s so hard to explain. It’s hard to put into words exactly what is happening when we don’t really know ourselves. And it’s hard to plan a path forward when we don’t know what lies ahead.
Here’s what we do know. Our baby girl has been diagnosed with lobar holoprosencephaly. A fancy word to say that her brain has not divided into two hemispheres.
Holoprosencephaly itself is not all that rare. It actually occurs in about 1-250 pregnancies. But in most cases, the mother will miscarry before she even knows there is a problem.
What is more rare is for babies with this defect to be born. Only 3% of babies with holoprosencephaly make it to birth. And only 1% live past the age of 12 months.
So that is what we are dealing with. We are mourning the loss of our little girl who has not even been born yet. She’s still very much alive and kicking in my tummy, keeping me up every night. I get bigger and bigger every day, and am starting to feel like I’m 40 weeks pregnant (even though I’m just shy of 26!)
On the ultrasound and MRI, every other part of her body looks perfect. Heart, kidneys, lungs: all growing and working fine. While around 50% of these cases are caused by a chromosomal issue, our daughter has absolutely none. It is a completely random anomoly (lucky us). Our doctor actually said “if you didn’t look at the brain, you would never know there was a problem”.
But this issue with her brain…it is a very big problem. It’s nothing that any doctor or surgery can fix. It simply is what it is, and that is so incredibly frustrating. There’s also no way to really know how our daughter will be affected until she’s born. Will she be able to breathe or eat on her own? Will she have reoccuring seizures? Will she ever be able to walk? Talk? These are all things no can predict.
And just how much time will we get with her anyway? A few hours? Days? Months? Years? Will we even get to meet her alive at all?
I go back and forth between good days where I’m hopeful this is something we can manage, and sad days where I’m suddenly hit with the realization that we will be planning a funeral for our daughter. As much as it hurts to say it, it’s not a matter of “if”, but “when”. In nearly all cases, children with holoprosencephaly don’t live to adulthood.
So instead, we are taking things one day at a time. For now, our goal is to make it to term so we can meet our daughter. From there, we can make better decisions about how much and what kind of support to give her. We will treat each day with her as a gift, no matter how hard it will be.
Nothing in this life is guaranteed to us. Not our healthy children or our spouses or our own lives, for that matter. Shouldn’t we be living as though each day is a gift anyway? We can’t go on waiting for this season to pass, because one day, I’m sure, we’ll look back and wish we could have some of it back.
That doesn’t mean we don’t live with terrible anxiety – we do. We cry often and ask God why he chose us. Even talking about the simplest things like picking a baby name, taking newborn photos, or setting up a nursery have become so difficult. All of the things you should be excited about in a pregnancy now just remind us of our loss.
But this is our life and there is nothing we can do to change our circumstances. Literally, nothing. We can either choose to be angry and sad, or we can choose to make the best of our situation. And we have always been ones to choose the latter. We are incredibly fortunate to also have some amazing family and friends to help us through it. Thank you to everyone who has sent kind messages, cards, and prayers – they mean so much to us!
The journey from here will be a difficult one and we appreciate your continued prayers as we navigate it.
PS. We took a family trip last week and spent some time in the San Francisco Bay Area (clear of the wildfires, don’t worry!) Those few days were a great distraction, though there were definitely some tears in there too. I hope to be back next week and sharing some new posts with you in a happier light!
I love you guys with all my heart.
You are all in my thoughts, my prayers, my heart. Aunt Shirley