Fixing Anencephaly. Our Search for Answers.

At any given time, you can walk into my classroom and see my children "fixing" things. Fixing their toy, fixing their feelings, fixing their work, fixing their friends ow-ie. They can fix anything they feel needs fixing. Its my goal that when I send them off to Kindergarten that I have instilled in them confidence, courage, love, kindness... and that they can "fix" ANYTHING they put their mind to.

So when I was told that I couldn't fix my baby I wasn't very happy or convinced. When I was told NO ONE could fix my baby, I didn't understand. And when I heard no one was trying to fix my baby I became infuriated.

So here we are. I want to share with everyone what we have learned. I hope we spark a doctor's ability, a neurologist's curiosity, an engineer's creativity, and someone's compassion. I hope we ignite other parent's power, and inspire them to fight for their baby...to defy the odds. I hope Luca is the light to the fire on the path to fixing Anencephaly.

Earlier this week we got a call back from Heidi Cope from Duke University. They have spent the last two decades researching the genetics of families affected with Anencephaly and other Neural Tube defects. By studying these families, they hope to identify the genes that contribute to the development of the Neural Tube. Their hope is that their research will eventually lead to more accurate genetic counseling and risk assessment, improved treatments, better prevention methods, and possibly, a cure. Music to our ears! Duke University is the only research team, that we have found, studying Anencephaly.

When Luca is born they will take his cord blood and blood samples from Jeff and myself. Our samples and DNA will be sent to their lab and be used for their research and contribute to their hope. We are honored to be a part of their vision.

While its comforting to be "doing something", our hearts still hurt. It doesnt feel like we are doing enough.

On Wednesday Jeff and I visited Mercy Hospital and got a peak at our little munchkin. Gosh is he cute, and a wiggling machine.

I was in awe by how much he moved, and it seemed people in the room were too. Maybe they were just being kind, but that kid, our kid, moved like his brother! He was everywhere. Anywhere the ultrasound probe prodded he squirmed out of the way. In every article I have read I have been redundantly told that Anencephaly babies have no feeling, no movement, they are born brainless vegetables. I already knew he was a kicking machine, but research has been telling me its just spontaneous, because of his brainstem. Watching my Luca dance around the screen was so amazing and raised more questions. How could he move? It appears that he can feel? How can he be reacting? 

My mind was racing. 

Then there are these beauties. 

See our baby? See his sweet little head? See HIS BRAIN?! Our baby has a brain, he isn't brainless. 

So I double checked what I knew again. 

"He has a brain?"  "Yes."

"That is connected to a brain stem?"  "Yes."

"And this brain stem runs down his perfect spine?"  "Yes."

So why in the world will he be born without a brain? 

The answer I got was pretty gruesome. 

"In this instance it will just fall off with the trauma of delivery, likely leaving an exposed brain stem."

WHAT THE FISHSTICKS?!!!!!

Luca is perfect in every way. He has 10 toes and 10 fingers. He has strong long legs. He has a spine that is beautifully crafted and a neck to hold his handsome face. He is just missing the top of his skull.
Anencephaly really sucks.

Through sobs, I asked the doctor if we could just very gently take him out, and find a way to cover his brain and protect it.

All I got was a flat no. He has Anencephaly and he will die. 

I HATE being told no. (Ask Jeff ;)) And now I just realized where Declan gets it. ;) Oye!

So it bothered me. It bothered me A LOT! 

The next morning I called my Dad. He's the smartest man I know. I asked him why the doctors were so adamant about Luca dying. Why can't we gently take him out and cover his brain? Hell, Id build him a head! A helmet! Id graph him a skull from my own skin and bones. Whatever it takes, why cant they do it? Anencephaly is a neural tube defect just like Spina Bifida. Why cant they go in, right now, and cover his sweet little head just like they do with SB babies?! WHY?!!! He'd been thinking the same things but didn't have an answer. Surely, someone, somewhere has tried and Anencephaly babies are just unsaveable. I wanted to agree, but I haven't found a shred of study, trial, research, or attempt in the matter. Every place I look has the same blah information.
So agree, I could not. 

When I got to work I showed my beautiful baby boy to my coworkers. They started asking me the same questions I had been asking myself. It was such a relief, to hear so many people agree with me!

Id told them how I didn't understand why they couldn't cover his brain now, or why they couldn't cover it when he arrived. There are so many medical advancements, why cant we build him a skull?! Has it ever been done?!

Our school nurse used her knowledge and researched away. What she found was amazing. What she found was this Mamas flame. 

In March of 2014 a woman in Netherlands received the first ever skull transplant because of the use of a 3D printer. She suffered from a condition where her skull was thickening and squeezing her brain, causing her to lose vision and motor coordination. Had she not had the operation, she would have died. They were able to take exact measurements and recreate the shape of her skull using the 3D printer. I have included the link to the article below. The woman is said to be doing amazing and has regained her vision and coordination. Amazing huh?

http://www.medicaldaily.com/breakthrough-surgeons-use-3-d-printing-technology-perform-worlds-first-skull-transplant-273288

Then we came across Dr. Pravin K. Patel. He is a pediatric plastic surgeon at the Craniofacial Center at the University of Illinois and Shriner's Hospital for Children. He maps out surgeries for some of the Midwest's toughest cases of facial and cranial reconstruction (Knight). 

Whose to say he cant build my baby a skull?!

That afternoon I visited my OBGYN, in hopes of asking my questions and getting some clarity. 

I walked in with my confidence pants on and wrote down EVERYTHING I needed answered. She walked in and so it began...

R: "It appears to me that Luca has a brain and that he can feel and he can react to stimuli. Why cant we simply take him out, ever so gently, and save his brain. Why in the world do we have to let it just fall off?"

Dr. L: "I am new at this too, you are my first Mom with an Anencephaly baby. My knowledge and understanding is that as the brain floats, unprotected in the amniotic fluid it begins to corrode and deteriorate. There is so much risk for twisting and damage to the tissue as he moves. We see him moving so much now, but it is likely that as the weeks pass we will see him become more still and see less of a brain mass." 

R: "Why cant we do an inner womb surgery right now and cover his brain and protect it?"

Dr.L: "I believe because it is such a large mass to cover and such delicate tissue that it isn't a realistic procedure." 

I told her about my plan to get an ultrasound of Luca's brain and contact Dr. Patel about building Luca a skull. I also wanted to figure out the logistics of why they cant cover his brain now, just like they do with Spina Bifida babies. I walked in there thinking she'd be like the other doctors and kindly or maybe abruptly put me back on the weepy path by telling me "No. He has Anencephaly and he will die". 

But she didn't. 

She said do it! 

Gosh I love that woman.

So that's what we are doing. On Friday I called the neurologists at Children's Hospital. I am hoping that ONE of them will take a peak at Luca's brain activity. We want to know how much of his brain is actually there? How much is active? How much damage has been done, if any :) ?

I called Dr. Patels office too. I pray that he will look at my baby, and that he will try. I pray that he will want to be different. 

Tomorrow...I will call again. 

Today I will keep looking at how to fix Anencephaly. 

And in this moment I give this all to God. 

Knight, Meribeth. "3-D Printing Is Revolutionizing Surgery." Crain's Chicago Business. N.p., 24 Mar. 2014. Web. 28 Sept. 2014.