Monday, October 12, 2015

Limb-Body-Wall-Complex Babies Aren't Monsters

When I found out my unborn son's condition was most likely Limb-Body-Wall Complex, the first thing I did - since I'm not a doctor - was google it. Now don't get me wrong, googling is very helpful. But what I wish I had known at the time was that the "images" part of google isn't always the best. If you google Limb-Body-Wall complex, you're going to see a lot of monstrous things. Most of the examples are very young underdeveloped aborted babies (who tend to look like sweet little aliens even if their organs aren't hanging out). When you combine that look with the more extreme physical problems that can come along with LBWC, the result can be a little intimidating. That's not the image that expecting parents should see.

I'd like to share with you here my son in all his freshly c-sected glory. Is he all clean? No. Is his body perfect? No. But is he a monster? Not by any stretch of the imagination.

 This one was taken right after he was taken out of me. You can see they're still wiping my blood off of him and he was letting out his first little cries!
A little more cleaned up here. They had the organ bag ready, but it wasn't necessary since his omphalocele was small. 

 Here you can see his omphalocele - his bladder was the only organ on the outside. 
 His back was a little extra wrinkly because of the myelomeningocele on his back.  
They literally wrapped him in plastic wrap to keep everything secure.   
His left leg was small and thin, and at the end instead of a foot he had one big beautiful toe (complete with a toenail). 
All wrapped up, right before they gave him to Sean. 
 Holding Sean's finger and laying on my chest. 


  1. God bless you for loving your baby. He is beautiful. Your story has brought tears to my eyes. Thank you for sharing.

  2. I love Charlie too! What a fighter! He was determined to make his mark, and he did! Thanks also for educating us on the medical side of it. If I ever encounter any expecting mamas in my moms groups who have gotten the diagnosis, I can share your writings! Charlie was exactly who he needed to be! Just Precious!

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  4. Thank you for sharing your story of beautiful Charlie. What an inspiration he is- and so so cute. You are amazingly strong and though I don't know you I am encouraged by your commitment to your unborn blessing from heaven. You have such a wonderful story and I commend you for being willing to share with us. Thank you. Prayers for many blessings to you in your future.

  5. Thank you for sharing. My daughter passed away peacefully July 2, 2010 with LMWC and ABS. I am grateful you have shared this as I struggle to educate and spread awareness. All I can do is help make memories, and be there to hold a space for other grieving parents facing these decisions, these losses, and these lifetimes of legacies to remember <3