Ten weeks ago today, we found out we are about to embark on an adventure. We knew we were headed for the new world as we looked forward to parenthood. John and I talked about giving our daughter music lessons, teaching her how to play video games on the Xbox, and taking her all over the world. We will still do all of these things, but the adventure was going to be different than what we had expected.
When they wheeled me into the neonatal intensive care unit (NICU) to meet my baby for the first time, one of the neonatologists wanted to speak to us. He had suspicions that the baby may have Down syndrome. He ratted off hallmarks of the syndrome, the mongoloid eye folds, brushfield spots in the iris, large protruding tongue, wide space between the big toe and little ones, and single crease on the palm. He went on to tell us about the chromosomal abnormalities, three sets of chromosome 21 instead of 2, trisomy 21. I had to cut him off and explain that I do know a thing or two about chromosomes and trisomy 21. I teach this to my students. I study DNA and chromosomes in my research lab. My PhD thesis and post-doctoral projects were in molecular genetics. During meiosis, for the generation of ova and sperm cells, the chromosomes separation events malfunction. Instead of two cells getting one of each set of chromosomes when they divide, one cell gets both of chromosome 21. Each cell in a Down syndrome individual has 47 chromosomes instead of 46. The doctor told us that nothing was definitive until the chromosome tests are done. Blood sample would be send out the following Monday, and results won't be back for another week to ten days.
I finally saw her. It was so very bittersweet. I touched her through the armholes of the incubator. She was so soft. She was much smaller than I thought and had a head full of soft dark brown hair. She had all sorts of wires and tubing attached to her tiny body, IVs, monitors... She had phototherapy to reduce bilirubin levels. I called it the blue light special. I studied her features and tried to explain away all the Down syndrome symptoms. Her eyes are the typical Asian almond-shaped eyes. I've got a big space between my big toe and the little ones; she inherited that from me. I've met normal people with single creases on their palms. This was going to be a long wait until the test results came back. I was hopeful and was cautiously optimistic.
Even so, all sorts of questions went through our minds. What will her life be like? What sorts of needs will she have? How do we tell people about her? Do we tell people about her? I thought about Becky and Sue Sylvester's sister on the TV show Glee. I thought about Sarah Palin and her son. Reality started to sink in even though I still held out hope that the test would come back telling us that she's normal. It was a very long week. The congratulations people offered us for the newborn seemed to sting. But, how do we then tell the well-wishers about our daughter? We smiled and nodded thank-yous nonetheless. Most people didn't need to know. Besides, the tests haven't come back.
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