Ethan Bennett Gagne
By Lynda Hynes Gagne
A DMS alumna writes about her son's all-too-short life, and the blessings he left behind.
I'll never forget that Friday. It was a beautiful August afternoon in 2003. I was four and a half months pregnant, and my husband, Josh, was meeting my daughter and me at the doctor's of- fice for my second ultrasound. Emma, two and a half years old, was excited about seeing the baby. Although I'd already had an ultrasound, the first one had been done at eight weeks simply to establish a due date. This one would mark a turning point, for we would not only verify that everything was all right but also learn if we were having a boy or a girl. I remembered Emma's ultrasound at four and a half months. Once we saw her image on the screen, saw her little fingers and toes and watched her move, she suddenly became real. She was no longer "it" or "the baby."
In addition to Emma, I had a 14-year-old stepdaughter, Katie, and an 11-year-old stepson, Sam. I was secretly hoping for a boy this time, for that would make our family perfectly symmetrical—two boys and two girls; two older children and two little ones.
Soon after the technician began guiding the ultrasound probe over my belly, she told us that the baby was a boy! I squeezed my husband's hand. Emma didn't seem very interested in the black-andwhite pictures on the screen, however. I realized that she had probably been expecting to see a rolypoly infant like the ones in diaper commercials. Then the technician took some measurements to evaluate the baby's growth.
When she finished, she explained that she'd found two anomalies but quickly added that neither of them seemed significant. There were two choroid plexus cysts on the baby's brain, but she said such cysts are not that unusual. And the baby had an inflamed kidney, but she said that could be because he was already eliminating waste. She told us the doctor would look at the results and then come in to talk with us. I had just transferred to Dr. Cecilia Clemans, a 1994 graduate of Dartmouth Medical School as it happens, because my previous ob-gyn was on leave.
As we waited for Dr. Clemans to come in, I began crying. I knew something was wrong. Josh tried to reassure me, saying that Emma had probably had some anomalies on her ultrasound, too. "No, no," I said, "there was nothing wrong on Emma's ultrasound. This is not normal."
The wait seemed forever and intensified my fear that something was terribly wrong. Finally Dr. Clemans came in, greeted us, sat down, and said in a very gentle manner that we needed to talk about the ultrasound. We told her that we knew the baby had some cysts on his brain and a problem with his kidney. Carefully choosing her words, she said that in addition to those problems, the baby was very small, below the 10th percentile for his gestational age, and that his arms and legs were smaller than his head and body. She also told us that his hands were clenched. Any of these factors alone, she went on, would not necessarily be reason for alarm, but taken together they indicated that our son had trisomy 18—a chromosomal abnormality that causes severe mental and physical problems. Most trisomy-18 babies, she said, die before birth or shortly thereafter.
We were stunned. Neither of us had even heard of trisomy 18. Since none of the problems on the ultrasound were necessarily significant individually, I asked her what made her think it was trisomy 18. Dr. Clemans clenched her own hand as she explained that the baby's clenched fists—a position that had been unvarying during the entire ultrasound —were the most telling sign. She added that trisomy 18 is a random event, not caused by anything that I had done or not done.
This could not be happening, I thought to myself. What did she mean that our baby was going to die? He'd looked perfectly fine to me on the ultrasound. I'd always thought the worst thing that could happen would be spina bifida or Down syndrome. This is the 21st century, I wanted to shout. Isn't there something we can do, when babies weighing less than a pound survive?
The ultrasound findings pointed strongly to trisomy 18, but the only way to know for sure was by examining the DNA of cells in my amniotic fluid. Dr. Clemans said I could have the amniocentesis as early as Monday morning and the results by the end of the week. Before we left, she handed us a description of trisomy 18 from one of her medical books and encouraged me to phone the doctor on call if I had any questions over the weekend.
As we stood outside the office, Josh gave me a hug and I told him I was sorry. I felt numb. What had I done wrong? When I'd learned I was pregnant with Emma, I'd been thrilled because we'd been trying to conceive for many months. When I'd learned I was pregnant with this baby, however, I was not expecting it; had I not wanted him enough?
I spent much of the weekend on the Internet, reading everything I could about trisomy 18. It was all bad. Of babies who were born alive, average survival was three days in one study, five days in another. Most sources said 95% of trisomy-18 babies die within a year, but most of the published studies had even
Lynda Gagne is a 2003 graduate of Dartmouth Medical School's Ph.D. program in the evaluative clinical sciences and also holds an appointment as an adjunct assistant professor of community and family medicine. She lives in southern New Hampshire.