Sunday, August 19, 2012

A fuller explanation

Following my other Facebook announcements, there was a great outpouring of love and support, but also a good amount of confusion as to whether I was still pregnant or not, what was going to happen, etc.  I then posted this to give a fuller explanation.

"I've realized that many of my FB friends are now confused about what's going on with me and the baby, thinking I've miscarried.  I did not share the official diagnosis at the time I made the announcement because it's honestly not something you want to go about googling.  There are many horrific images out there, many of babies who have been aborted.

I am still pregnant and the baby is still alive and growing.  While I am definitely at a higher risk of miscarrying than average (all women are at some risk of miscarrying at any point in their pregnancy), it is quite probable that the pregnancy will go full term.  It is only after the birth, after leaving the womb, that the baby has a terminal diagnosis.

The official diagnosis is fetal acrania, which is very similar to the more common anencephaly.  (Anencephaly is a neural tube defect like spina bifida is, acrania is not.)  Basically, there is no skull to protect the brain.  For a more detailed explanation, please see this website: http://karinneclaire.blogspot.com/p/what-is-acrania.html
  This family's story has many similarities to what we are facing.  Local friends might be familiar with Baby Rachel's Legacy: https://www.facebook.com/BabyRachelsLegacy
"Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need."  Hebrews 4:16

Also, I currently have many friends who are pregnant or have newborns.  Please don't feel like you need to shield me from talking about these things.  While I can't predict how I will feel closer to my due date of February 17th, right now it truly does not bother me or bring me greater pain to enjoy your experiences and babies with you.  I still enjoy talking about pregnancy, birth, and breastfeeding, and have two wonderful past experiences that I still like to talk about.  As an extrovert, it's extra important to my mental health (and to K & T's!) that we still be able to get out and socialize and feel welcome with our friends."

Tuesday, August 14, 2012

After the specialist

From Facebook: "Sad to report that the specialist did not have good news for us today. The baby's condition is 100% lethal with no chance of survival. Very rare, not folic acid preventable, and not genetic, so I am not at any higher risk of recurrence than anyone else is. Very sad for my baby tonight."

Friday, August 10, 2012

Facebook announcement

I had an early ultrasound at 9 weeks to double check my due date as I was not confident of my calculations.  Baby had a great strong heartbeat.  I left that appointment sensing some uneasiness on part of the tech, and intended to call and ask the OB if everything was ok, but did not follw up.  At 11 weeks, the midwife called to say that I needed to come back for an ultrasound at 12 weeks "to check some measurements they were missing."  I went for the ultrasound at 12 weeks and was told that yes, there were definitely some things wrong, but that we would need to go see a specialist for a definitive diagnosis.

At this point, pretty much only family knew I was even pregnant.  On Facebook I wrote, "It's terrible to announce this via Facebook, but better than any alternatives I can think of. I'm ~12 weeks pregnant and due February 17th. But, early ultrasound shows severe issues with the baby's brain development. We are being referred to specialists at Dartmouth and have an appointment on Monday afternoon. Please pray for us."