Fixing Anencephaly Part 3

Our big ultrasound day arrived! We were certain that we'd get the answers we needed to steer us in the right direction.

Karen, our fetal care nurse, walked in and introduced us to another doctor of the Maternal and Fetal Medicine team.

He walked straight over to us, introduced himself as Dr.B, and said, "its great to finally meet you guys, you sure are stirring things up around here."

"Ha! Well that's quite the introduction, and hopefully it's stirring in a good way."

      We liked him already!

"So where are you guys with everything at right now?" he asked.

"Emotionally or where are we at in the Anencephaly diagnosis?" I replied.

"Both."

"Well, emotionally its a different story every minute of everyday. Sometimes we are great and taking it in stride, then other times I find myself so overwhelmed with grief. As far as dealing with his diagnosis of Anencephaly, its a different story each minute too. We know the reality of it all, we know what is likely to happen...but I'm often in denial. Maybe denial isn't the right word choice, but I try to be positive, pray, and hope that something will come along to save our baby. I don't want this for him."

"Ive heard you've been in contact with Dr. Patel."

"Well, we talked. He's a pediatric craniofacial surgeon and someone who could certainly build our son, Luca, a skull. But, as you know, there is so much more to it than that. Our main concern and priority right now is to see Luca's brain. In all of my research I'm told that Anencephaly babies are born without a brain, maybe because its just not there, it deteriorates, or it just falls off. To us, since day one, its has always looked like Luca has had a huge brain mass. We just want to know if what we see is in fact true. I think it would really give us some clarity and direction. I can understand if a child is born brainless that they cant survive...I can't understand if a child has a brain and a perfect body why he has to die. Also, if he does have parts of his brain, would it still be considered Anencephaly? To me, it looks like it would be more of an Acrania diagnosis."

"Those are valid questions, and you deserve to know. I know too that the only way things in the medical field change is because someone has to pioneer the road. You guys are asking those questions and creating that road. I want to tell you everything that I can but also keep it in perspective for you, but never forget that their has to be a starting block for change."

Holy crap! Did he just say what I think he said? Did he acknowledge what we were doing, support it, and like it? I love this man.
He could clearly see the shock on my face that his words had just caused, so he just smiled at me and grabbed the ultrasound probe.

"Lets take a look at that brain!"

As he scanned Luca, Luca made no movement. Our little wiggle worm stayed so still for the doctor. I think he knew how desperately Mommy and Daddy needed this.

"Wow, it appears that all of his brain tissue is intact."

"Even his cerebrum?"

"His cerebrum appears to be there too. Nothing is missing."

"What about any deterioration? Has that set in, can you tell?"

"It doesn't appear to have."

"So do you agree that he has an Acrania diagnosis?"

"Yes. I do. Acrania and Anencephaly are often linked together. There hasn't been any research in the progression of brain deterioration of Acrania babies from diagnosis to birth. Many times because they are terminated or there just hasn't been an interest in researching, so those answers aren't out there. If they are carried they often will begin as acrania and because of all the elements and delivery they lose that structure of the brain so therefore its Anencephaly. I'm trying to see if there is actually a membrane covering his brain tissue for it to be this well preserved. When you read about the cases where the babies have lived longer its usually because they have had a protective membrane. (He continued to scan over Luca's face and brain) I can't tell for certain so I can't say yes and I cant say no."

"In my reading as well, it states that many times with Acrania babies, the brain hasn't split into two hemispheres. Can you tell that from the ultrasound?"

He rolled over Luca's brain, and peered in close.

"Take a look right there" he told us and pointed to the screen. "See that line?" "That's the fissure that separates the two hemispheres. His is split in two. Its a little shaky at the end here, which could indicate brain disorganization, but it is split in two."

"That is amazing news. Thank you thank you thank you!"

He turned off the screen, grabbed my hand and looked at me...

"Now although he has his brain structure and two hemispheres, I have no doubt that there is a lot of brain disorganization. There is a defect in his neural tube that caused this and because of that there is likely many other things that went wrong and are going wrong. To say he lived and developed like a typical developing child isn't a probable scenario."

"Yes that's a huge struggle of ours. We want to do everything we can for our child, but at the same time we struggle with what kind of life we'd be giving him. Its hard, and the only thing we can do is take it one step at a time."

Karen, chimed in. "Yes, many times in these situations, you have to ask yourself what are you doing FOR your baby as opposed to what are you doing TO your baby." (that saying has really stuck with me)

"Do you think that a fetal MRI could tell us what sort of brain disorganization might exist?"

"The fetal MRI can tell you some things, but the brain is a massive system. There would be so many things that the fetal MRI can't tell you and can't pick up."

"Thank you again for you time, and for your positive words. You've truly been a breath of fresh air and we really appreciate it."

At the moment I thought he'd let go and be leaving. Instead, he sat back in his chair, crossed his arms and looked at us...

"Well, tell me... what are you guys going to do next?"

I guess we really are creating a new path, even doctors are becoming curious!