So, that last post… ugh.
We got some bad news at our ultrasound. Baby G was diagnosed with Limb Body Wall Complex – a very rare and fatal condition. What has happened is the abdominal wall did not close and most of G’s organs are outside of the (we think his) body. Like that’s not bad enough they have fused to the placenta. He will probably go full term but will die during birth or very shortly after.
I think I’m still in a bit of shock. I just shook my head and said “No, not again. I will not bury another child.”
So, we have 2 choices: induce and deliver in a few weeks or carry full term and deliver then. Either way, the outcome is the same.
As for choosing hope like I mentioned in the last post: believe it or not there have been a few moments where I have been able to. They have been few but they are there. I told a couple of my friends that we are going to beg for a miracle and prepare for the worst.
We have gone away for a few days to mull things over and figure out how to break this news to the kids.
Here is my plea: Please pray for healing for our son. That is the footnote I want in the textbook – “Doctors were unable to determine the resolution – he was miraculously healed.”
You are so full of grace. I’m praying for a miracle.
Oh, I so wish I would have found you earlier so we could have gone through this together. I also got a scary mid-pregnancy ultrasound at almost 20 weeks. We also chose to carry our baby. In our case, there was always a chance she might have made it – the doctors just didn’t know. We even spent 8 weeks in the hospital hoping to save her. I was induced at 34 weeks at 8/28/09 because they thought it might be better for her outside the womb at that point (we were dealing with severely low amniotic fluid, and it’s standard to induce early once the baby is nearly finished developing, usually around 34 weeks), but what the doctors didn’t know is that her kidneys were extremely underdeveloped, and she could not live. I feel so deeply for you right now, because I know all too well how difficult going through all of this is: the scary mid-pregnancy ultrasound, the 2nd half of pregnancy being full of fear and hope and not knowing how to balance such hope with the reality of things, and then the terrible, terrible feeling of watching your baby die in your arms. I am sending you so many hugs…I wish I could give you more than that. Just know you are in my thoughts.
Thank you for sharing your story. I am a woman who doesn’t use the internet for much but my daughter was diagnosed with LBWC at 22 weeks. She would not survive delivery and her life was incompatible outside the womb. We miss her so much and my grief still runs so deeply but I can at least breathe a little easier with each passing week. She was our firstborn and all of our family is stricken at our loss.
I appreciate other stories and I wish I had the luck to hold her alive but I held her inside, alive, happy, kicking and for those moments I am grateful and the nursing staff, doctors were incredible and gave us so much to remember her by.
Again-thank you. I am so touched that others have the courage to share so those of us who think we are alone, learn that we are not.
Blessings to your beautiful family-
Amanda, Craig and our angel Ceiliedh