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Dying Well


higher figures—up to 100%. And even when trisomy-18 babies lived beyond a year, all were severely mentally retarded and had significant physical problems, including heart disease, severe apnea, cleft palate, club foot—the list seemed endless.

But after poring over everything I could find, I began to hope that our son might not have this horrible condition after all. The ultrasound had not revealed a heart defect, but the literature indicated that 90% of babies with trisomy 18 have a heart defect. The ultrasound had also not shown any of the other physical anomalies commonly associated with trisomy 18. Most encouraging of all, our child was a boy and trisomy 18 is four to five times more common in girls. However, I couldn't ignore those clenched fists, which are common among trisomy-18 babies. Yet trisomy 18 is very rare—occurring in only 1 out of 5,000 to 8,000 births; there had to be another explanation for those fists, I kept thinking. I did find a relationship between cocaine use by an expectant mother and clenched fists. Maybe he was clenching his fists because I drank too much diet Coke. And maybe his kidney problem was what was restricting his growth. We can certainly do something about a kidney problem, can't we? I thought. Perhaps the ultrasound was just a false positive, and all my anxiety would be for naught. I began feeling hopeful.

On the other hand, Dr. Clemans had seemed sure. She had not said, "There is only a slight chance of trisomy 18—let's do the amnio to rule it out." I remembered her saying that if I had any questions over the weekend, I could get in touch with the practice's doctor on call. I decided to phone her. "Couldn't this be a false positive?" I asked, after explaining the hopeful signs I'd found. I was grasping for anything that might indicate a different diagnosis and a better outcome than trisomy 18 had to offer. The doctor on call was familiar with my case. She explained that it was all the anomalies collectively, not any of them individually, that strongly indicated trisomy 18 or another chromosomal disorder. As I hung up the phone, I fell to the floor, crying, "No, please no, don't let this be happening."

"Couldn't this be a false positive?" I asked. I was grasping for anything that might indicate a different diagnosis and a better outcome for our son. But it was definite —he had trisomy 18.

Because we had already learned that many trisomy babies are miscarried during the first trimester, we decided to name our son right away. We called him Ethan, which means strong. Later, we searched for a middle name fitting for our Ethan and decided on Bennett, which is Latin for "little blessed one."

On Monday morning, I met Dr. Clemans for the amniocentesis. She used ultrasound to determine the baby's position, then inserted a long needle into my belly to draw out a sample of the fluid within the amniotic sac. It was not painful. But I was afraid to look at the ultrasound. I had been praying that Ethan's fists would not be clenched this time. Unfortunately, they were. So, anticipating that the results of the test would be positive, I decided to tell Dr. Clemans then and there that regardless of the outcome of the amnio, we planned to continue with the pregnancy.

The time between the amnio and the results seemed interminable. On Thursday, Josh and I returned to get the definitive word. We were soon ushered into Dr. Clemans's office, where she was waiting for us. In a soft-spoken and compassionate manner, she told us that the results had revealed what they'd thought. She showed us the diagram of Ethan's chromosomes, and sure enough there were three on his 18th pair. All of the other sets had only two. The report outlined the poor prognosis for trisomy-18 babies and recommended genetic counseling. Although we knew this was the likely result of the amnio, the news still fell on us like a bomb, shattering all hope that we would have a healthy son. My tears came gushing out.

With damp eyes himself, Josh said, "Well, we are going to have a son, his name is Ethan, and we will have him as long as we have him." Suddenly I did not feel so bereft; we were going to see this through together. So, I asked Dr.

Clemans, what happens now? Would I be followed like other expectant mothers or was there little point in regular visits? She was very reassuring and said that she would actually want to follow me more closely than the usual mother.

I cried all the way home. It was definite—our son had trisomy 18 and would probably not live long. He might not even be born alive. In the days and weeks that followed, I could not help but think about Ethan. I'd see kids playing soccer and be reminded that he would never kick a soccer ball. I'd look at Emma and know that she might never meet her brother. Oh, how I wished my precious little boy were going to be all right.

At my next prenatal visit, I talked with Dr. Clemans about having a level-II ultrasound and an electrocardiogram to learn more about Ethan's prognosis. I wanted to know as much as possible so we could make good decisions. The office scheduled an appointment with a radiologist in Boston who specialized in diagnostic ultrasound.

About two weeks later, Josh and Emma and I headed for Boston. I was hopeful that we'd learn more about the likely course of my pregnancy and Ethan's life. There was also part of me, the irrational part, which still nurtured a fantasy that the level-II ultrasound would not find anything wrong with Ethan, or at least would indicate that his condition might not be lethal; maybe he'd have unusually mild physical anomalies for a trisomy-18 baby. After battling through Boston traffic, finding a parking space, and locating the correct building, we arrived just in time for the appointment.

We were brought into a dimly lit room by a technician. As she examined the images of Ethan, I eagerly asked her questions: "Are there still cysts on his head?" "Are his hands clenched?" "How often do you see trisomy- 18 babies?" "What characteristics do you often see?" I was hoping to hear that Ethan was better off than most trisomy-18 babies. Instead, the technician repeatedly told me that the doctor would answer my questions—she was "not allowed to comment on the ultrasound." I tried to think of other


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