We got to see our precious little GIRL, Denali, today for the first time in detail. We got to see her little hands and perfect little feet and all of her little organs. She was squirming and kicking and waving her arms around. She was so cute! Unfortunately, she was diagnosed with anencephaly- a fatal neural tube defect. Basically, she does not have a skull or a brain, which is not compatible with life outside of the uterus. (If you decide to google anencephaly, please respect that these babies are human beings and not a freak show to be ogled. They are someone's child.)
When my OB called me last Friday morning, she said that we were at an increased risk for spina bifida and Trisomy 18, as I mentioned previously. Anencephaly did not even cross my mind. It wasn't until we met with the genetic counselor this morning and she said that we were at an increased risk for neural tube defects that it hit me- I immediately blurted out, "does that include anencephaly?"and she confirmed that it did. I knew in my heart that that's what it was.
I've been horrified by anencephaly since I first learned about it in medical school. For some reason, I started reading the blogs of families who had anencephalic babies. If you had asked me yesterday what the absolute worst outcome of pregnancy could be, I would have said anencephaly. And I haven't changed my mind. It seems like I always knew I would have a baby with this horrific birth defect.
After we met with the genetic counselor, we went in for the ultrasound. A sonographer student started the scan taking a million measurements and joking that the baby wouldn't hold still. It seemed like she looked and looked for a long time. The nurse told us that when the student was done with the scan, the doctor would come in and take a look to verify. When the student finished, she left the room and I sat up. I had gotten extremely queasy lying on my back that whole time and when I sat up, I immediately started vomiting all over everything. It was not pleasant. After the nurse, John and Mom got me cleaned up a bit, the doctor came in. We chit-chatted about how we were both DOs and career choices. Then she started scanning again. She looked at all of the same structures and chatted pleasantly the whole time. John had to leave in the middle of the scan to go to an appointment, so, when he left I told the doctor that I wanted to know the sex. She looked around and said "It's a...GIRL!" and typed GIRL on several pictures! I was soooo excited! Mom and I were laughing and the nurse congratulated me and asked me what her name was. I told her it was Denali. I looked at Mom and I said, "Oh no, I guess this means a teenage girl" and the doctor said, "this means a whole lot of things. I have a 5yo girl." I immediately thought that I would only have a teenager if she survived, but I put the thought out of my head. Everything seemed fine and the genetic counselor had reassured us that most of the time babies with a positive quad screen are fine. I started to relax a little and enjoy watching my daughter. The doctor said that she was really having a hard time seeing the head because the baby was pressed up against the placenta and that she would have to switch to a trans-vaginal probe. I got prepped for that and was in good spirits. My heart sank when she started looking at the head. I couldn't see the top of the head, but I told myself the placenta was in the way and that I'm not that good at reading ultrasounds (Bull crap. Oh the lies we tell ourselves!). I asked the doctor if everything looked okay and she said she couldn't see what she needed to see. And then she said she couldn't see a cranium. By this time, I knew that I was also seeing what I thought I was seeing and tears started streaming down my face. I told the doctor I was worried and she said, "yeah" quietly. Mom came over and sat beside me and held my hand. At that point, the doctor moved the probe and a frontal picture of the baby's face came up. Anencephalic babies have a very characteristic look to their faces and heads and I immediately knew what I was seeing. I started crying a little harder. The doctor said she needed to talk to her partner and sent the nurse to get him. She said she didn't want to say anything until she had a second opinion. The nurse came back and said the other doctor was with another patient and the doctor said to tell him that she really needed him. He never did show up and finally she withdrew the probe. I asked her if it was anencephaly and she said she thought it was. I started screaming "no, no, no" and crying hysterically. Mom came over and grabbed me and we both sobbed. The nurse burst into tears, too. The doctor said she would give us some privacy and left the room. Mom wanted to call John, so I did. He was driving and I told him that it was bad. He asked me what it was and I told him that our daughter did not have a brain. He said "Oh no" and said he would be there shortly. The doctor came back after a few minutes and said that she had talked with her partner and that he also agreed that it was anencephaly. We talked a little about what it meant and she kept repeating that it's a lethal deformity and that the baby would die. We talked about options. We talked about statistics and chances for having future children. We talked about how much folic acid I took before I was pregnant (the recommended dose) and during the first trimester (way more than the recommended dose). We talked about diabetes and how my sugars are doing because uncontrolled diabetes can cause anencephaly. As far as I know I'm not diabetic, but I've been doing fingersticks anyway and my sugars have been stellar. She recommended chromosomal testing for the baby when she dies and genetic testing for me, as well as a HgA1C. She said I could have an amniocentesis if I wanted one, which I don't. John came in about then and she repeated everything while we held each other and cried. Mom left and walked around the office and she said the office staff were all crying too. Finally, the doctor told us to stop downstairs at my regular OB's office to make an appointment. She had called ahead and spoken with the OB. The office staff were incredibly sweet and offered us drinks and snacks and put us in a room. Finally the OB came in, crying. She shared her personal story of a similar situation and discussed our options with us. Both doctors gave me their personal cell phone numbers and told me to call anytime. I thought they both handled the situation very well and I will remember that when I have to give bad news.
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| This picture captures our feelings better than anything I could write |
So, where do we go from here? We basically have two options: 1) induce labor now and end the pregnancy early and 2) continue the pregnancy. I really don't want to hear anyone's negative comments about either choice, so keep them to yourselves. This is our decision that we will make together with input from our families and spiritual advisors. It's funny, but my immediate reaction was the same reaction I had when I learned that my last pregnancy had ended with a missed miscarriage- I want this baby out of me! NOW! I didn't want copies of pictures or anything. I wanted to check myself into the hospital and be induced right then and there. Cooler heads prevailed and I got some good advice to wait until next week to make a decision. I don't know what we will decide, but for now I'm happy knowing that my baby girl is safe inside of me and very much alive! The vaginal probe must have aggravated her (or perhaps all the stress hormones) but she has been feisty all day letting me know she's there! The doctor said that eventually she will stop moving, but for now she's wiggling for all she's worth!
This has been the worst day of my life, and trust me on this one people, I've had my fair share of rough days. I'm so thankful that Mom, my brother Samuel and John are here with me! I also feel lifted up on the thoughts and prayers of so many people and I'm thankful for that as well. I don't know what the future holds, but I know it's going to be one hell of a rough ride from here on out. Please, please keep us in your thoughts and prayers!
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