Devastating diagnosis on my unborn baby


Today was the scheduled day for our gender reveal party. Unfortunately we decided to cancel it

Not because celebrating our babies gender was not important, but because celebrating would be much to difficult in a time like this.

After everything we've already been through, our horrible nightmare is still not over.

On Wednesday of this week, we went for our 20 week anatomy ultrasound on our 3rd wedding anniversary. We were so excited to find out the gender of our baby. We were given a baby onesie from the doctor before the ultrasound took place, just to amp up the excitement.

Everything seemed to be going great, all measurements were ahead of schedule.

Then the tech focused on our babies brain. Not for a few minutes, for an hour. Then she would leave, measure another body part, and go right back to the brain. I finally asked, what are you looking for?? All she would say is, sometimes it's just too early to get a good picture. I asked if it was ok the baby's head measured smaller than the rest, she said yes because it can vary.

She decides to move on to the gender reveal- and reveals “those are girl parts!” However, now we were much too concerned with the focus on the brain to even feel the excitement.

Next we meet with the doctor in her office. She asks us if the tech told us anything about our ultrasound. I said she wouldn't tell us what the issue is or what's going on. The doctor would not divulge any more details other than, “there are shadows on the babies brain and you will need to see a specialist asap.”

This was followed by the doctor telling us our pregnancy “was going so well, and it's nothing we did” in the past tense, like it's over… basically the same words we heard two times in the past year. Followed by a hug from the doctor.

Move into Thursday, after spending an entire night crying and googling the possibilities, we see the specialist. Her team had to do their own images- another 1.5 hour scan focused on the brain, and they still had trouble getting what the needed. Eventually, we were told they finally got the pictures they needed and to come back in two hours to meet with the doctor.

During the ultrasound I finally got the tech to tell us what they are looking for. She said our OB wanted them to rule out “holoprosencephaly.” Of course I had no idea what that was, but we had 2 hours to Google it.

I prayed we would meet with the doctor and she would tell us they ruled it out.

Instead we were told that our baby has holoprosencephaly, and the very worst kind. Her brain never separated into two hemispheres and this situation is not compatible with life. If she doesn't die in utero, she will die at birth or shortly after.

Flash forward to the car ride home. I received a voicemail from the same doctor stating she received reports for my OB's scan and they were able to see more structures that she could not today. While she still feels like we are dealing with holoprosencephaly, it could possibly be a lower degree. She suggests a fetal MRI to fully diagnose the severity. If one of the less severe forms, the baby would have a chance at a longer lifespan, but would still be at risk for intellectual disabilities as well as a number of other impairments.

Of course we will do the MRI and see what we are facing. However the only possible “good” outcome is that the doctor is simply completely wrong.

So now I continue to carry my baby, not knowing how long I will have her, not knowing if at any second her heart stops inside me. Not knowing if I will be able to hold her while her heart is still beating. Not knowing if she will live to see a 1st birthday or even long enough to open her eyes out in the world.

There is no hopeful/inspiring speech to add to the end of this post. Sometimes life is just unfair and there is no silver lining. Sometimes life is just plain cruel. No we are not ok, yes we are continuing on as best as we can because we have a daughter already who also needs us to get through this. We are not strong, and we are not brave. We are broken.