I truly can’t believe I’m about to write this again. We have devastating news regarding our current pregnancy. Last Wednesday, I had an official ultrasound and the doctor was able to confirm my fears. Our baby is going to die. Our little 9 weeker was moving and the heartbeat was strong, but we received a diagnosis of acrania/anencephaly. For those of you new to this blog, I’m a high risk OB sonographer at Duke. We’ve had three pregnancies: the first ended up as a stillbirth at 29 weeks due to limb body wall, a normal pregnancy with Lydia and this one. You can catch up and read the first blog post ever about Cora here. With this new pregnancy, I’ve known something was wrong for a while, as early as 7 weeks. I was scanning myself daily and was recording weekly videos and pictures to write future blog posts here about fetal development as seen via ultrasound, because I notice factually inaccurate information online all too often.
What is acrania/anencephaly? Acrania and anencephaly are hard to distinguish this early via ultrasound. Basically, the skull never fully develops and the brain is exposed (acrania) or the brain never develops beyond a brain stem (anencephaly). The doctor thinks our baby has acrania. Both have the same prognosis. Most of these babies, if they’re not aborted, go full term. They may be born alive and live for a few hours, even days.
We’ve been through this process with Cora, so hearing the news is completely awful but I know what to expect somewhat and how to prepare myself for whats coming. What makes a big difference this time: Lydia and Aben. I have no idea how they will deal with this, because I have no idea how we will deal with this. I believe life begins at conception and I believe this life is just as precious as Cora, Lydia and Aben’s. We are choosing life again, but I can tell you it’s not easy. We don’t just have each other to worry about, we have young kids involved. Josh and I both had those fleeting thoughts of “this would be so much easier to terminate now”. 95% of these babies are terminated and honestly, I can see why. It’s a disturbing diagnosis to comprehend. As a sonographer at a high risk OB clinic, I have seen about two or three cases in my clinic of anencephaly (only one family I’m aware of that continued the pregnancy) and none of acrania. As soon as the doctor takes them to a consult room to give them the diagnosis, there is usually screaming and wailing. There is no hope of survival in this diagnosis. There is a possibility we may be able to donate this baby’s organs (unlike Cora), but it’s on a case by case basis. If we can donate, we absolutely will. I probably will not share as many ultrasound pictures of this baby as I did with Cora, due to the fact that it’s hard to hide his/her defects.
We are not strong. We are not heroes. We are scared out of our minds, we’re hurting, we’re angry this is happening AGAIN and worried about our kids and their emotions. I believe that this baby’s life has as much value, as much dignity, as my mom had toward the end of her battle with cancer. Time left doesnt change inherent worth. Even though it doesn’t make any sense why this is happening, all we can trust is that Jesus is on His throne and God is in control. In the midst of all these raw emotions, as hard as it was when Cora died, so much GOOD came out of her legacy. We have Lydia and Aben as a result of her death. People told me that her story changed them. Her story changed us. I have to believe that God wouldn’t put us through all of this again for nothing. But even if we don’t see the good in this life, He is merciful and compassionate. He won’t leave us alone through this just like He didn’t the last time. I hope we can be transparent in our pain and in our hope in Christ and that people see the Gospel through this experience.
What can you do? You can support us in prayer and grieve with us. You can tell us “I’m so sorry, I don’t know what to say and this sucks”. Please don’t be silent. Dont be embarassed that you don’t have the words to say because no one does in times like this. When we name him/her please call the baby by their name. Please understand when we don’t hang out or join you, but please keep asking us to. Maybe we will get to the point when we are outwardly celebrating this life and we may need you to celebrate with us. Right now, we are still in shock and disbelief that this is happening again and we haven’t gotten to feel of contentment or joy in this situation. My cry to the Lord looks like Lamentations:
I remember my affliction and my wandering,
the bitterness and the gall.
I well remember them,
and my soul is downcast within me.
Yet this I call to mind
and therefore I have hope:
Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, “The Lord is my portion;
therefore I will wait for him.”
The Lord is good to those whose hope is in him,
to the one who seeks him;
it is good to wait quietly
for the salvation of the Lord.
Please pray these things for and with our family:
- We can find ways to share the Gospel through this baby’s life.
- We can still find happiness, joy and humor in life.
- We are able to explain to Lydia and Aben when it comes time what is happening so that they can understand.
- I am able to work at this high risk OB clinic with grace and maybe be able to share this baby’s story, when appropriate, with patients.
- We are able to deal with this day by day and not worry about delivery yet (as I am already becoming anxious thinking about it).
The video below is taken by me at 8 weeks. This is the earliest we can see fetal movement by ultrasound. Just watching this, I see a life. Maybe one that society doesn’t deem worthy, but God knit this little person in my womb. We need your support to get through this and we need your intercessions on our behalf. Please pray with us and for us.
Love you all,
Josh, Rebecca, Lydia, Aben and Shrader baby #4