Tuesday, December 16, 2008

Our journey so far...

My name is Myah Walker. In about 8 weeks from now I will be giving birth to my little girl, Faith Hope. Faith was diagnosed with anencephaly at my 19-week ultrasound on September 12.

When I had my 19-week ultrasound, I remember the look on the radiologist's face (I can't describe that look) and when he asked me if this was my first child, I had a feeling that something was up. He said, "Something is wrong with the baby's head. This doesn't mean that you can't have healthy babies in the future." That is all he would tell me, that there was something wrong with the baby's head. My mother immediately suspected anencephaly, which I had never heard of at the time. Her sister's first baby was diagnosed with having "no brain", so she had a feeling it was the same for me. While my mother and I spent an hour waiting for the diagnosis, I was praying that it was only Down's syndrom and not what my aunt's baby had been diagnosed with.

The doctor told me with tears in her eyes, "What they found is that the baby has no brain." She said that I could choose to continue the pregnancy with no risk to my health, but that my baby would die shortly after birth. Or, I could choose to induce early to terminate the pregnancy.

I was shocked. Just an hour earlier I was watching the ultrasound monitor and I could see her swimming around and sucking her thumb just like a normal baby. She looked perfect to me. I thought, no brain? How is that even possible? I said to the doctor,"Well... she must have some brain," but she just shook her head and said, "No." She assured me that her movements were "only reflexes."

When given the option to either carry her to term or terminate the pregnancy, I immediately told the doctor that I wanted to carry her to term. It was not a decision that I had to think about. For some reason I had to give the doctors my decision over and over again, which was frustrating. One doctor asked, "Can I ask why you want to continue this pregnancy?" I guess some people are baffled by unconditional love.

I found out later (with the help of the internet, sadly) that this condition is a neural-tube defect called "anencephaly." Nothing could have prepared me for the shocking photos that I came accross on the internet as I did an information search. I had no idea that babies with this condition also had an open skull that ended right above the eyes. I was traumatized by the images and the hurtful words used to describe the babies' physical appearance. You can be sure I will never do another internet search on anencephaly for as long as I live.

At 20 weeks, I had some beautiful ultrasound photos taken at a place called "Baby Images." They also confirmed that I was having a girl.

I never really believed that Faith had "no brain" because I had seen her sucking her thumb on the ultrasound monitor and she seemed responsive to my touch. I suspected that she must have some brain, and if she did, I wanted the doctors to be aware of it.

I requested a second ultrasound but was denied several times. I was told that I didn't need one because my first ultrasound showed that everything else was fine. I said I wanted a second opinion but I guess that wasn't a good enough reason (even though it was). Apparently one of the other doctors who I was no longer seeing scheduled an ultrasound for me in advance, so I ended up having a second ultrasound the same week that this other doctor said no. Hehe...

At my next doctor's appointment, I explained everything to my doctor and she was actually very understanding. I told her that I believed the doctors had given me information based on general knowledge of anencephaly (or whetever nonsense they learn from text books) and not on the radiologist's actual findings. I told her that I hadn't even seen the ultrasound reports or any of the radiologist's photos. To my surprise she offered to show me both reports and some of the photos taken by the radiologist that she had archived on her computer.

The first report stated that Faith's brain was anencephalic, with "some residual brain tissue" present. No measurements were taken of her brain, though (which surprised me). On the second report it stated that anencephaly was apparent. Again, no measurements were taken of her brain and no other details were given. I looked at a scan of her brain labeled "supra orbitals," which means above the eyes. It appeared that she had brain tissue even up to her eye level. That's quite a lot of "residual brain tissue" if you ask me.

When I went back to have more 3-D photos taken at Baby Images at 7 months, I could see that a brain was present and protruding out of her skull a little bit. This was clearly visible in many of the photos.

It is apparent to me that Faith does have a brain, despite what the doctors have said. Even though it is generally believed that anencephalic babies are blind, deaf, and cannot feel touch or think... I don't believe that. Not at all. So little is known about the human brain and the only one who really knows what's going on is God. I truly believe that Faith can think and can feel my touch and hear my voice. I can't prove it but I feel like I just know.

I feel very blessed that Faith's anencephaly is not as severe as I was initially told and that the doctors haven't found any other "anomalies". I am not suffering from polyhydramnios (an excess of amniotic fluid), which I am very thankful for as well. So far my pregnancy has been relatively low-risk and I am expected to be able to carry her to term.

I have been experiencing severe back pain that has been getting progressively worse. I can walk around or lie down, but I cannot be in a sitting position for very long before I am in severe pain. But no, I am not looking forward to my pregnancy being over. I cherish the time that I have with Faith still in my belly and I wish I had longer than 8 weeks.

But I'm also looking forward to when I can finally hold her in my arms and give her kissies! xx