"Has anyone ever told you.."

In order to tell my story, I have to go back to the beginning. September 10th 2009 was a day that I thought could possibly be my worst, little did I know how insignificant it was going to become. This was the day I met with my OBGYN for my first pregnancy checkup. I was pregnant with my 4th child. after the initial intake my nurse practitioner said to me "has anyone ever told you that you have an enlarged thyroid?" and my answer was "No...why?" It turns out that my thyroid was indeed very large and I was to go in immediately for an ultrasound. What became of the ultrasound is that there was a large "tumor" on the right side of my thyroid along with a smaller cyst with calcification in it. on the left side was another small tumor. I then met with my surgeon and was told that it may or may not be cancer but we will have to wait for the baby to be born before we can go any further with it. Along with the severe anxiety that came from learning that I may have cancer, came the sadness that this could quite possibly consume me for the duration of my pregnancy, being that this was my fourth and final child I had hoped to enjoy every second of it.



after a week or so my anxiety calmed down and I was able to go back to focusing on my pregnancy. I was trying to convince myself that being the mother of 4 boys was unique and that it was something that I wanted. but truth be told, I was secretly hoping for a girl. This secret became very well known the closer I got to my ultrasound. I had taken a gender predictor test (OK, maybe I took 3 or 4) and got the result: girl. I had cute little pink clothes for her and was designing her room in my mind. She was going to be my little princess.



November 17, 2009 was the big day. My husband, myself and our 7 year old son headed in to the doctors office to officially recieve the good news. The ultrasound tech took measurements and told us all how active our baby was. She told us that our little peanut was being stubborn and keeping it's legs together and then suddenly - "oh! there it is... It's a boy!" One of my greatest regrets will always be the dissapointment I felt when I heard those 3 words. It's a boy? I spent the rest of the ultrasound feeling sorry for myself, I would never have a daughter. As soon as the ultrasound was done I began texting my friends and family the "bad" news. I kissed my husband and son goodbye and headed in to the exam room to meet with my doctor.



"There was something wrong. It's not good".

Those are the words I remember, those are the only words I remember.



I should have seen the signs that something was wrong. Why did I not get to see his face in the ultrasound? Why didnt I see her measure his head?



"Your baby is anencephalic." anen-what? I had not heard this term before and didnt know what it meant.

The National Institute of Neurological Disorders and Stroke (NINDS) describes the presentation of this condition as follows:

A baby born with anencephaly is usually blind, deaf, unconscious, and unable to feel pain. Although some individuals with anencephaly may be born with a main brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining consciousness. Reflex actions such as breathing and responses to sound or touch occur.


My baby was growing, but his brain was not.

We had a choice to make. Do we have an abortion? do we induce and deliver now or do we go full term? I was not willing to have an abortion. So how do I know what to do? I dont want to do either, I dont want to be going through this.

If we go full term our baby boy could be still born or live for hours or even days, nobody knew.

If we chose to induce, our baby would probably not survive his birth.



We agonized over our choices for the next week, during this time we met with a genetic counselor who gave us a lot of information on genetic deformities, None of which I can pass on given the state of mind I was in.

Doctors, nurses, friends and family assured us that there was nothing we could have done to prevent this (other than taking high doses of folic acid prior to and during the first 3 weeks of pregnancy- HOW COME NOBODY TOLD ME THIS?!)

But we were still left wondering, running through the what if's, and trying to figure out what we did to have this happen to us and to our sweet little boy.