Broken Zipper

upsidedownRight after we arrived home from our vacation we had our 4.5 month appointment. This was the day we found out if our baby was a boy or a girl. Chris and I arrived excitedly at our appointment with my mother. We went into the office and got to see our baby’s form on the screen. Foot. Hand. Heart. Stomach. Wiggly Body. Head. And lots of other neat intricacies. It was a GIRL. She still had a strong heartbeat. We were thrilled. After the ultrasound, my mom ran out to the car and reappeared with a fuchsia bag with heart-patterned tissue paper inside.  Malia’s first gift! She exhorted Chris, saying that he was going to be an amazing father of a baby girl and it was essential for little girls to have great fathers. We decided to name her Malia at the point and looked through our list of middle names that we had brainstormed a few months back. Malia June. Her name is  Malia June.

We then went in to meet with our mid-wife. As we were waiting, I looked at Chris more times than I can count and said “It’s a girl.” “We’re having a girl.” We couldn’t stop smiling.

Our mid-wife entered, sat down on a small rolling stool and shared that she had some difficult news for us. I took a big gulp as she shared that while looking at the ultrasound, they couldn’t see any evidence that Malia developed a brain. As a result, she would not survive long after birth. Our world instantly turned upside down. The mid-wife shared this was beyond her expertise and she would recommend us to a specialist immediately for a followup visit. She gave us a few minutes to process, but we were in such shock that we just sat there and stared at the wall. She then recommended we induce labor soon and end our pregnancy. My first questions were why is the baby moving around? How does she have a strong heartbeat? The mid-wife didn’t have answers, but said those questions could be asked to the doctor when we saw him later.

When she left the room, we cried and cried and hugged each other. I told Chris I didn’t want to terminate the pregnancy, and it had never been an option for us in his mind, so he quickly agreed. (Later we found out that 95% of families in this situation in our country do terminate their pregnancies.) Chris called my mother a few times and finally got a hold of her.

We drove home in silence, devastated, feeling that we were in an alternate reality. We cried and cried. We scheduled an appointment for the higher quality ultrasound at a prenatal center later that afternoon. I started googling what all of this meant. The condition was called anencephaly, literally ‘without brain’. Only five percent of affected babies live longer than five days. It was a neural tube defect. Some articles stated it had to do with lack of folic acid during pregnancy. Immediately I thought, it was because of me. Was it my fault this happened?

After a few hours, we went to the prenatal center. My mother came with us and we went in for a second ultrasound. I cried as we watched Malia moving around, the wand rolled over her hand so many times that it looked like she was waving to us. My mind and heart were overwhelmed. All I wanted to do was hold those little baby hands. She has  her dad’s nose, and rectangular feet like him too.

After the technician left, the doctor came in with two counselors. He looked at the ultrasound and confirmed the same diagnosis. He was the nicest doctor I have ever met. He shared that it was a neural tube defect. When the baby was about 20 days old, the nervous system usually closes up like a zipper. However, this did not happen with Malia. He was very direct in saying that it was not my fault, looked at my husband and said the same, and looked at my mother and said the same. They have not established the cause of this condition. He said there was nothing I needed to do right now. Except breathe. I kept on hearing Drew Barrymore’s voice in my head, like when she told herself to breathe in that old Cinderella movie, Ever After. So, I breathed.

I then started asking many questions. We met with the counselors afterward and asked them even more. They encouraged me not to google the condition anymore, but they would give me some quality resources.

This was a day in history that we would never forget, and looking forward, we realized we were living a life that we never expected.


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