conversational topics to break the obvious tension in the room. But she was clearly not interested in idle chatter.

When the doctor arrived, she introduced herself and said she understood we'd had a previous ultrasound finding of trisomy 18. "Yes," I said, "and we also had a positive amniocentesis for trisomy 18." I went on to explain that we were there to learn as much as we could about our son's condition so we'd know what to expect. She then turned away from us and began examining the ultrasound screen. After a few minutes of silence, she said that everything she could see was consistent with trisomy 18: he was small, he had clenched fists, and he had a heart defect. "What kind of a heart defect?" I asked, since the previous ultrasound had not shown one. "He has a hole in his heart and also has a valve defect," she responded, adding that the hole was "big." He had a 50% chance of dying before birth, the doctor went on, and if he was born alive he would die shortly thereafter. She added that 95% of people in our position would terminate the pregnancy.

I explained that I understood the outcomes associated with trisomy 18 and that we had decided we wouldn't engage in any heroic measures such as "life support" (we didn't want to be in a position where we'd have to choose to turn it off). But if there were things we could do to increase our chance of having time with him, we wanted to do whatever we could. I also told her that I needed to make some decisions regarding his birth, such as whether or not I would have a caesarean section. I explained that if, for instance, his heart condition caused him to go into distress during labor, I planned to have a c-section. She replied that she did not think it would be ethical to do a caesarean section on a woman with a trisomy-18 baby since the baby would not live anyway. "If you are going to let nature take its course," she said bluntly, "you need to let nature take its course." She did not seem to understand that although I knew Ethan had a poor prognosis, his life, however long or short, was precious to me. Before we left, the doctor asked if we'd like an ultrasound image. I said I would, and she gave me a small, black-and-white picture of Ethan's profile, similar to the one we'd received at the routine ultrasound.

Top, "big sister" Emma holds Ethan. Above left and right, Ethan's paternal grandparents take their turns with him.

As we left the office, another couple walked out of a different exam room and we waited together for the elevator. As we stood there, the other couple was talking and laughing as they looked at the ultrasound pictures they'd received—great big pictures with three-dimensional images as well as some smaller, two-dimensional ones. It was obvious that they were having a healthy baby, and it seemed almost cruel that all we'd received was a single, small, two-dimensional black-and-white image; I would have treasured similar pictures of Ethan.

I was disappointed and frustrated. Not only had I hoped to gain more insight into Ethan's prognosis, but I'd been made to feel my questions were an annoyance. The doctor seemed to believe that because Ethan was going to die, either before birth or shortly thereafter, there was no point in determining what his particular problems were. Even when I'd specifically asked about his heart condition, I was told merely that he had "a big hole." How could I look up "big hole" on Medline or the Internet? Isn't that why we'd had a level-II ultrasound?

In the days that followed I grew more and more angry at the suggestion that I should do what "95% of other women in this position do—terminate." Was I supposed to just turn off my love for my child? Pretend that he never existed?

Regardless of Ethan's prognosis, he was my child, not a fetus with trisomy 18, a statistic, an anomaly. The experience left me feeling violated and depressed.

At my next visit to Dr. Clemans, she explained Ethan's heart defect and said that it would not affect him until after he was born. We also discussed hospital options. I explained that although we did not want heroic measures, we would like him to receive any care that would be given to a normal baby who needs assistance—such as oxygen. I compared what I wanted for Ethan to the care that would be given to an elderly person who has decided against invasive procedures but does desire hospice or palliative care.

After much deliberation, I decided to have Ethan at a community hospital with no neonatal intensive care unit. Although I wanted to have as much time with him as possible, whatever time I had I wanted to be good. I also wanted our entire family, particularly our three other children, to be able to spend time with him, which would be much easier if we were close to home. And since it is not unusual for trisomy-18 babies to die during the last few weeks of pregnancy, Dr. Clemans and I also discussed whether to induce labor shortly before my due date—and we eventually settled on December 26 as an inducement date.

December was an extremely difficult month. I was eager and terrified at the same time—I wanted so much to hold Ethan in my arms but was so afraid of losing him. I kept secondguessing all my decisions and was on the Internet constantly looking for answers, but I found few. I felt powerless and alone.

The Saturday before Christmas, Katie asked me to drive her to church for a youth group event. When we got there, she said I needed to go in to sign a permission form. As we entered the room, I heard a loud cry of "Surprise!" I saw lots of people I knew, mostly women, but it still didn't dawn on me what was going on. I thought maybe we were in the wrong room and looked behind me for the person they were all waiting for. There was nobody there. When I turned back, I heard someone say, "This is a shower for you and Ethan." I was stunned. Once I realized that all of these people had put together this surprise party for me, less