Journal of Genetic Counseling, Vol. 1, No. L 1992

Letter to a Genet i c C o u n s e l o r

R o s e G r e e n 1,2

The author describes her personal experience terminating a pregnancy after receiving an abnormal amniocentes& result: While still waiting for the results, she and her husband attempted to deny the importance of the pregnancy, an approach which they subsequently regretted. When they received the abnormal result, they found themselves able to make necessary dec&ions quickly, despite being in shock. It then took some time before they realized what a major loss they had actually suffered. The painful aftermath included accepting emotional responsibility for their dec&ion to abort, as well as explaining that difficult decision to their older children. Thoughts of a possible subsequent pregnancy couM not be faced at once. Over time, the author found the support of friends and colleagues, and even of a support group, to be invaluable. All in all, the entire experience was more painful than she wouM have predicted, and she hopes that this account will prove helpful both to genetic counselors and to other patients who receive abnormal results from prenatal diagnos&. A list of suggested readings is appended.

KEY WORDS: abnormal amniocentesis results; abortion; bereavement; genetic termination; prenatal diagnosis--positive outcome; psychological aspects; psychosocial aspects; support groups.

D e a r K, You have been so helpful to me and my husband in coping with the

agony of abort ing a wanted pregnancy. You asked me to write you some of our thoughts and perspectives now, several months after the abort ion, in the hope that this may be helpful to you and your future patients.

1Rose Green is a pseudonym. 2Correspondence should be directed to "Dr. Rose Green," c/o Journal of Genetic Counseling Editorial Office, Developmental Medicine and Genetics, Albert Einstein Medical Center, 5501 Old York Road, Philadelphia, Pennsylvania 19141-3098.

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1059-7700/92/0300-0055506.50/1 �9 1992 National Society of Genetic Counselors, Inc.

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THE WAITING

When I was almost 40, my husband and I finally made the decision we'd been putting o f f - - t o try to have another child. I got pregnant with no difficulty and in due course went to have an amniocentesis. At that time, we told only our children and a few close family members that I was pregnant. I had not given much thought to the emotional aspects of pre- natal testing until then. We had been saying to ourselves and the children, "Well, after the amnio we can tell people about the pregnancy," but only after the amnio was completed did we fully realize that we actually had another :2 or 3 weeks to wait.

Now, in the 3 months since the abortion, I have thought a lot about how we handled the waiting, and I wish deeply that it had been different. I feel now that we made several mistakes: We didn't share the pregnancy, and hence the joy of the pregnancy, with others. We denied its reality to ourselves. We tried not to get attached to the "fetus" (as we insisted on calling it). We were anxious but did not face that anxiety.

The anxiety itself is surely an unavoidable part of prenatal diagnosis, but these other adverse effects resulted from choices that we made. How- ever, these choices were not conscious or informed. How I wished, afterward, that someone had gently raised the possibility to us, early in the pregnancy, that it might be preferable to share the pregnancy and the wait- ing with more people.

My experience in this regard is much like that of Hodge (1989) and of some of the women interviewed by Rothman (1987).

GETTING THE BAD NEWS

I got your phone call on a Friday afternoon at work. I was relieved that you were calling and that we would finally be able to let out our secret. Gently, compassionately, you said you had bad news for us. I knew at once what that meant, although for some reason I kept thinking "Trisomy 18" instead of Down Syndrome. I called my husband, and told him. I wasn't very coherent. I just said, "Down Syndrome, it's Down Syndrome," and at first he had no idea what I was talking about. Finally I said, "Our baby has Down Syndrome." He said, "You're lying!" Then, "How many cells did they count? Did they see it in 30 out of 30 cells?" He called you back to get some more details, while I went home. We told the children. My first reactions were, "What a shame," and "How strange that I'm not more upset than this." What I didn't realize was that I was in emotional shock. The impact didn't start to hit me until 1:00 the next morning, when I woke up unable to go back to sleep. I spent the rest of that night, and the next

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several nights, too, walking up and down the house, crying and crying. In those first four nights, I slept less than 12 hours, altogether. There was a clue here, a hint of the tremendous blow this was and the tremendous amount of grieving that lay ahead (although I didn't yet realize it).

When we got the bad news, I immediately rejected the baby as "other," "alien." I didn't want anything to do with this child, once I knew it had Down Syndrome. Other women have talked of terminating out of love for the unborn child, but I can't honestly say I felt that at the time. Certainly part of my justification for aborting was to spare the baby a life of disability and suffering. But that wasn't emotionally as powerful as this sense of rejection. Only later, say, a week after the abortion, did I again begin to feel love for and attachment to my was-to-have-been baby.

We got the news on Friday but couldn't start the dilatation until Tues- day, and the actual abortion wasn't until the following T h u r s d a y - almost a full week later. (I had spoken to you earlier in the week and asked you to call me with the results immediately, no matter what day or time). I later found that many genetic counselors do not call with bad news on a Friday afternoon, but I was very glad that you had. I hated the thought that a weekend could have gone by with someone else knowing something terrible about us that we did not know.

MAKING CHOICES

Whether to Terminate

The first choice was, of course, whether to terminate the pregnancy or not. For us there was no question, nor did that certainty ever change, even though we had no idea of just how bad the whole experience was going to be. When my husband and I had talked about this ahead of time, even before I became pregnant, we had both known that I would have an abortion if the baby had a serious chromosomal abnormality. I had imagined, how- ever, that we would suffer some emotional distress about the decision. I had anticipated that at some emotional level the decision would be something like 95 - - 5 for abortion. But when it did happen to us, when we were faced with the reality of trisomy 21, the decision was simply 100 - - 0. On the other hand, I had anticipated that it would be "really sad" to have this happen, but I had had no idea of how emotionally devastating it would be.

A friend immediately put me in contact with a woman she knew who had aborted an abnormal pregnancy just a month earlier. It turned out that talking to this stranger was the single most valuable thing I could have done that weekend. We cried together on the phone, as she relived what was still so recent for her. It put things back in perspective for me: This

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does happen, this is why we have amnios in the first place; my husband and I are not freaks because of this; etc.

It was also enlightening to hear how this woman's experience differed in some ways from ours. She and her husband had not really thought ahead of time about what to do. When they got the amnio results, they discussed it with their minister and some close friends. They finally decided to abort and were very clear in the end that it was the right decision. Much more than we did, they viewed their 20-week fetus as a baby, and despite that could choose abortion and feel right about it. Later the woman wrote me: "Since last December I've sure become much more aware, as I 'm sure you have, of kids with Down Syndrome - - and observing them always confirms our decision. I know that our little baby girl is at peace - - that she did not have to deal with all the difficulties confronting retarded c h i l d r e n - [we] are very much at peace with our decision."

Telling Others

At the beginning of that ghastly weekend, I figured I would just crawl into a hole and not come out until it was all over. I would stay out of sight for a week, then come back to work with my head held high, not admit that I'd ever been pregnant, and just let people wonder and think whatever they liked. Oddly, I felt ashamed and embarrassed, somehow freakish, that this had happened. Amniocentesis has become so routine, and we have so many friends and colleagues over 35 who are having or have just had babies. None of these friends has gotten a bad result. Amnio is perceived as some- thing you do to reassure yourse l f - -wi th a bonus of learning the baby's sex if you want to. So I felt that others would be shocked to learn that we had produced an abnormal baby, that somehow we would be outcasts.

Also, I felt it would be obscene and indecent to show myself at work, still pregnant, if everyone knew that later in the week I was going to have an abortion!

However, this same woman, the one who had had an abortion the previous month, described how she continued to go to work in the days before her abortion and how she did tell friends and co-workers what was happening. By the end of the weekend I'd realized that my initial impulse to hide in a hole was dead wrong. I did go to work on Monday. I did tell face-to-face the people I 'm closest to, and they did put their arms around me and cry with me. Word got around, and there was an outpouring of sympathy and support. People sent flowers, and on the night of the abor- tion, friends brought over a hot meal. I had had no idea so much support would be there, and even more surprising, I had had no idea that the

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support would help so much in getting through those ghastly first few days and nights.

Type of Procedure

The third choice was whether to undergo induced labor at a regular hospital or have a di latat ion and evacuation (D&E) at an abort ion clinic/hospital. You carefully explained the pluses and minuses of each op- tion to us. You said that with induced labor we would be able to hold the fetus and that an autopsy could be performed, but that the labor could be as painful as, and last as long as, real labor. The D&E would be quicker, more predictable, and relatively p a i n l e s s - all in all, physically easier on the w o m a n - - b u t the fetus would be mutilated. You explained that with the D&E, I would go to the abortion clinic twice, on Tuesday and Wednes- day, to have laminaria inserted for the dilatation, and would then go to the abortion hospital on Thursday for the actual abortion.

I seemed unable to understand or retain what you were saying, al- though the D&E sounded preferable. Over the weekend my husband and I discussed it at length. We also asked some colleagues, who said that the D&E was probably actually safer, if done by an experienced physician. We did settle on the D&E. (I am speaking here about choices for a late sec- ond- t r imester abortion. Clearly some choices will be different for a first-trimester abortion.)

I later found out that some private obstetricians tell their patients only about induced labor, or strongly steer them toward that option. Whether this is because they themselves do not perform D&Es and do not want to lose the business, or because they truly feel it is in the woman's best interests, I do not know, but it makes me very angry when I hear of it. A woman trusts her physician to give her accurate, unbiased information, particularly at a time of crisis and loss.

MORE WAITING

The subsequent week of waiting was indescribable. Whenever I saw my pregnant body in the mirror, I felt like throwing up. I had had some mixed feelings about the pregnancy, especially during the first trimester. I sometimes thought, Why did we ever decide to do this? What do I need a new baby for, at this age? I developed some severe back pain and really resented not being able to take the usual medication for it. But in the second trimester, these feelings of ambivalence slowly faded, and I was be- ginning to be just plain thrilled - - especially after I started feeling the baby kicking.

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Now all of a sudden everything was upside down. I could still feel the baby kicking during those 6 days between getting the results and having the abortion, but now feeling those movements was just agony. And now I could take any medications I wanted; after all, I 'd be killing this fetus in a few days, so it didn't matter. It was a horrible switch: to go from being careful and protective of this new life to deciding to end it.

Because we chose a D&E, we knew we wouldn't be able to see or hold the baby. The night before the abortion, I pulled out our copy of A Child is Born (Nilsson, 1989), with the beautiful color pictures of embryonic and fetal development. I found the picture of a fetus around 20 weeks old - - about the size of my hand. I stared at the picture for a long time, cup- ping my hand to feel the size.

THE ABORTION

The abortion clinic setting was harrowing. I got no emotional support there. I sat and waited, for hours at a time, in tears. My husband was not allowed to stay with me once I left the outside waiting room. No one put a hand on my shoulder, said a sympathetic word, or even offered me a tissue. If anything, the staff seemed embarrassed by my emotion. I desper- ately wanted someone to ask, "Why are you crying?" so I could say, "Because this is a wanted pregnancy," but no one did. It would have been less harrowing if someone could have come with me m ideally my husband, or else a woman friend, or you as the genetic counselor - - someone to run interference, sit with me, look out for me. If I could have been separated from the other patients, who didn't want to be pregnant, if I hadn't had to sit and wait for hours each day, if the staff could all have known ahead of time that I was terminating a wanted pregnancy and could have said something sympathetic - - any or all of these things would have been better. As it was, I felt abandoned.

I so appreciated your putting on your lab coat and sneaking into the abortion hospital on the day of the actual abortion to visit with me for a while while I was waiting.

The actual abortion took about 15 minutes. It was painless under the general anesthetic. I had no discomfort afterwards, either. As I came out of the anesthetic, my uterus was twitching, and it felt exactly like the baby's movements had a mere half-hour earlier. I couldn't help asking the surgeon the gruesome question, "Are you sure you got it all?"

In the ensuing weeks, I've talked to other women who've had genetic terminations. All except one chose prostaglandin-induced labor rather than a D&E. All described it as miserable, horrible - - w i t h pain, vomiting, diarrhea, and the anguish of laboring to deliver a dead fetus. And all the

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women I've asked said that the major reason they chose to go through this misery was to avoid going to an abortion clinic, being separated from their husbands, and being put in a room together with women who did not want to be pregnant.

In any case, this feeling of being abandoned remains, second only to the actual loss of my baby, the worst aspect of the whole experience. It is one of my most painful memories, and continues to hurt and haunt me n o w .

L M N G WITH THE LOSS/MOURNING A DEATH

I have been completely unprepared for the magnitude of the loss, the depth of the wound. The evening after the abortion, I called a close friend and said, "Well, I think the worst is over now . . . . " How mistaken I was. Over and over, as I look at my letters, journals, and notes, I see the recurring theme: "I can't believe how bad I still feel." For the first weeks I couldn't eat, I couldn't sleep, I couldn't concentrate. I went around with a grinding feeling in the pit of my stomach that something was "terribly wrong." Sometimes I almost felt that I couldn't breathe. I was stuck in molasses and could hardly move. I know that these are classic symptoms of grief and bereavement, but I was unprepared to suffer them for losing "only a fetus."

During this time I have had to confront a number of difficult and painful issues.

(1) Was it a "Baby" or a "Fetus"?

While I was still pregnant, my husband and I deliberately said "fetus" rather than "baby," partly for our sake and partly for the children's. But now we say "baby" most of the time. Morally, religiously, and politically I do not believe that a fetus is a full human being. However, I have been forced to recognize that emotionally, at least for me as the pregnant woman, I was carrying a baby, pretty much from the moment I confirmed I was pregnant.

(2) Guilt vs. Respons ib i l i ty

At first I told myself that since my husband and I did not doubt our decision to terminate this pregnancy, emotionally the abortion would be the same as a miscarriage, and in fact a miscarriage might be worse if you didn't know the cause, didn't know what was wrong with your baby. Well, that last point is probably true enough, but it's not the whole truth. I have

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had to face the fact that we chose to kill this fetus, which we had conceived in love and hope. I have had to face the fact that I felt the baby kicking as I walked into the abortion clinic. I have had to face images of blood and death, and of a fetus in pieces. I 'm sorry, K, this is difficult for me to write, and it's probably hard to read, too, but I don't see any point in writ- ing it at all if I 'm not going to be honest. I cried and cried and cried about this. Slowly, a vague image formed in my mind of a small creature, a could- have-been baby, sleeping a dreamless sleep - - I can't articulate it any better than t h i s - but I have been able to make peace with this image.

It comes down to facing and accepting responsibility for the abortion, and for our decision to abort. Note I say "responsibility," not "guilt." "Guilt" would imply that I had done something wrong, or made a choice which I now regret. "Responsibility," on the other hand, means that I rec- ognize that I did make the choice and that I can stand up and accept that choice.

(3) Bizarre Fantasies

I am tormented by fantasies and weird ideas that come and go in no particular order. In one fantasy, I have been offered the choice that if I give up my baby, my infertile sister will get pregnant and will have a healthy, normal baby. I consent because it is worth losing our baby so my sister can have one. I find this thought compelling and comforting. At the same time, it is a childish idea, and I try unsuccessfully to stop it.

Also, I keep replaying the phone call scene the way it should have been. It starts the same: I am in my office talking to a student. The phone rings, and it is you. Hear t pounding, I ask the student to step outside for a moment. You say, "I have good news for you - - everything looks OK do you want to know the baby's sex? . . . . Yes." You tell me. I thank you and call my student back in . . . . Here the scene stops dead, as it hits re- ality; then it replays from the top. Over and over. Somehow I should be able to go back and redo that critical moment, get it right this t i m e - if only I could find the way.

I fantasize, too, that we decided not to believe the results and to continue the pregnancy. Sometimes I am overwhelmed by the irrational thought that the whole thing has happened only because we believed in it and allowed it to happen - - " w e " referring not just to my husband and me personally but to society in general. If "we" hadn't accepted the reality of chromosomes and trisomy and amniocentesis, then these phenomena sim- ply wouldn't exist, and I would now be 6 months pregnant with a normal child.

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The flip side of this fantasy is one in which trisomy is indeed a real phenomenon, but we decided not to have an amniocentesis. (In fact, after the obstetrician had failed to get amniotic fluid on the first day, the thought had briefly entered my head, "Well, we could just skip it; after all the risk of an abnormality is so low"). In this fantasy I continue, confident and happily pregnant, only to receive the shock of the Down Syndrome child on the delivery table.

In the first weeks I was tormented by the fear that the lab had made an error. I had grisly fantasies that we'd killed a normal, healthy fetus, even though I knew how careful everyone is to avoid precisely this kind of error. No one else, not even my husband, could understand this fear, except other women who had had the same experience. After 2 weeks you called to tell us that the diagnosis had indeed been confirmed in the fetal tissue. It was an enormous relief, really tremendous.

I am intelligent and educated, a professional woman. I've always thought of myself as a wholly rational person. I feel these fantasies and images are ridiculous and even childish. In fact, they are extremely un- pleasant and unwelcome. I don't want to think along these lines, but I cannot stop. Now after 3 months, at least they recur less often and less intensely than in the first weeks.

(4) Telling the Children

We have been straightforward with the older children. B, 7 years old, was thrilled to be "getting another baby" and was very upset about losing it. Over the weekend after we got the news, she came up to me, put her arms around my slightly swollen abdomen, and kissed it several times. She whispered to my navel for a minute. "I'm saying good-bye to the baby," she explained sadly. As for T, age 11, she had had mixed feelings about a baby in the first place ("I'll move into a motel when the baby comes!"). We hope she doesn't feel guilty about what has happened and think it was somehow her fault.

We have had to explain to them, over and over, that what was wrong with the baby was wrong back at the very beginning, before we even knew I was pregnant, and was not caused by the amnio or anything else during the pregnancy. The children have never seen me cry before, and it has been difficult for them to see me so upset.

I tell the children that the way I am acting now is normal, and that it will end (though sometimes I hardly believe it myself). When T says, "Mommy, I just hate it when you cry," I tell her I have 10,000 tears to cry about the baby, and I can cry them now or I can cry them later, but they have to be cried.

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I found an account written by a boy whose baby brother had died of crib death (Richter, 1986). He told about his mother's crying and "spacing out," and about his own fear that someone else in his life would "go away" as the baby had done. T read this and then confessed that she, too, kept fearing something else bad would happen to our family now. One day when I was walking her to school, I tripped on the sidewalk and fell full forward. My hands and knees were scraped and bleeding. She became inordinately upset and talked for days afterward about this "vision" of Mommy lying face down on the sidewalk and of how frightened she had been. I think reading that account has helped her talk about her own feelings better.

We do not want the children to conclude, "If a baby isn't perfect, Mommy and Daddy will kill it" - - a conclusion I'm sure the anti-abortion- ists would love to fasten onto. I would not have terminated a pregnancy for a minor abnormality, and I have told the children that. One day, B asked, "What's so bad about Down Syndrome, anyway? If you hadn't had an abortion, Mommy wouldn't be crying so much." My husband tried to describe some of the aspects of daily life with a severely handicapped child, both for the child herself and for the rest of the family. He said to B, "You know how hard you have to concentrate, and how long you have to think, to figure out something like 18 times 7? Imagine if you had to think that hard every time you wanted to cross the street and had to remember whether 'red' meant 'stop' or 'go. '" Later I talked to the children about being forced to choose between a bad alternative and a worse one - - a point you made to me, K. I put it in terms of choosing between having the tips of their little fingers cut off vs. having a whole hand cut off. This seemed to make sense to them; they understood that even though you would "choose" to lose only the finger, you would still cry about it. I have also told them that if something happened to one of them, I would cry, not 10,000 tears, but 10 million.

A good friend of ours grew up with a younger brother who has Down Syndrome. He wrote us a long letter, describing his daily life before and after his little brother was born. He described what daily life was like for him at age 8, at age 11, in high school, and now. I read his letter to T and B. They listened, fascinated, interrupting with questions and comments. Our friend wrote that he loves his retarded brother as much as he loves anyone, but that he would never under any circumstances choose to bring a child with Down Syndrome into the world. Fie would accept any risk of prenatal diagnosis rather than that, and would without question abort a DS fetus. He described how, in early adulthood, his brother is now devel- oping signs of Alzheimer's disease, and is slowly losing those few skills which the family had so laboriously helped him master. T said to me corn-

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fortingly, "Maybe you'll feel better now, Mommy, because you really did do the right thing."

(5) The Children's Reactions

Recently, I asked the older children to write or dictate their thoughts. B, 7, gave me this:

I was sick and my morn said she was going to come home early that day, at 5:00. She came home at 3 instead. I hate this part; it's the most terrible part, I can' t tell about it, It's too upsetting. I felt it was going to be great to have a little sibling ( 'cause I didn't know it was a sister). I felt that I would be able to tell anybody I wanted if it was better to have a little sibling or a big sister. And I thought that I could boss the little sibling around, and if it didn't listen to me than I could be mean to it. I was very surprised when I found out that my mother was pregnant. I was so surprised I almost fainted. I didn't believe her when she said she was pregnant. Well, I did after the beginning. After we got the bad news I thought that I was the most upset because I had never had a little sister or brother before. My mother had a little sister and brother. My family felt terrible and so did I. I didn' t cry once but my mother still cries a lot. I hope in the future that she 's going to try and have another baby and it will work out and it will be a little sibling and it won' t have Down Syndrome, 'Cause I still think the things I said at the beginning about how I'd like to have a little sister or brother:

T wrote this:

When my mother and father first told us at a Friday dinner that she was pregnant, I didn' t believe it. But after a while I realized they weren' t kidding and it was true. I didn't realize what could be bad. I unders tood something could possibly go wrong, but I didn' t unders tand what it was. I didn' t think it was very likely, so I didn' t try to unders tand it. And my sister didn't seem to realize anything could go wrong. She just talked about how she 'd change the baby's diapers. Because of that, I think she was affected more than me when we got the bad news. It was again a Friday when we got the news. I was picked up by my father at school, which was unusual. He told me, "We got the results of the amnio today, and the baby has an extra chromosome." I said, "Does that mean that M ommy will have an abortion?" He said, "Yes." I was s tunned the rest of the way home. I'd been looking forward to having a baby in the house more than I realized. That was a terrible Friday evening. It was the very first t ime in my life that I'd seen my mother cry. It really hurt me to see her cry, because I wasn't used to it, and I think she took it worse than I did. I was smart enough not to tell her not to cry, because I knew she needed to. I also felt that she never gave me enough attention since then. Even now after 3 months, she still doesn ' t give me as much attention as she used to. Our class was doing an invention project. I'd been planning to make a film can into something a baby could play with. But then I put the idea away. I didn't want to think about it. My mother was pretty terrible for almost 3 months, but she started getting better after 2 months. She's almost better now. But I don' t think this will be an incident we'll ever look back on with happy faces. The only good thing we can realize about it is that we wouldn't have to have a child like that in our family. Life would have been terribly hard for us and for that child. I sort of wished I hadn ' t known she was pregnant, so I wouldn' t have to know about this. If they do decide to try again, I hope they don' t tell me until they have the results of the amnio. I wouldn' t be mad; I 'd be grateful.

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(6) My Husband

Understandably, friends and family have focused more on me than on my husband. I 'm the one who was so intimately and physiologically con- nec ted with both the positive (the pregnancy) and the negative (the abortion). I can't tell if he minds this. I know he feels sadness and loss; he feels cheated because we've lost our baby.

At first I was mystified that he could go on with his daily life and concentrate on his work. Now, as the weeks have worn on, I am grateful that one of us is functional, can deal with the children, make decisions, and so on .

In a letter to friends and family, my husband wrote: "Before this letter had a chance to see the inside of a mailbox, something bad happened. Rose, being over 35, of course had amniocentesis to make sure that there were no chromosomal problems with the baby. We are now a statistic. We won the lottery that no one wants to win . . . . " And he referred to " . . . the emotional trauma of parting with the hoped-for joy and plans for an expected and wanted child. It has been difficult. It reminds me of the old Yiddish expression, 'If God lived on earth, people would break his win- dows.'"

Paradoxically, this event has brought us closer together, yet at the same time I 've become emotional ly s t ronger and more independent . C l o s e r - because we have accepted each other 's differences in this diffi- cult time. I don' t reproach him with, "If you cared, you'd be carrying on and crying like I am"; and he doesn't say, "Enough already! It's time to put it behind us!" More i n d e p e n d e n t - because at the deepest level, grief is so lonely. No one can share this pain, not even my husband.

(7) Other People

Other people's reactions leave an indelible impression, either positive or negative. The day after we got the news, I called my closest friend and told her. She said, "Oh, shit!" Later she told me she had spent the rest of that afternoon storming around her house, kicking and throwing things, and screaming, "It's not fair!" On Monday I told my secretary. She said, "No, Dr. G, no[" put her arms around me and started crying. A colleague came up to me in the hall and said, "Oh, Rose, how are y o u . . . I already heard what happened . . ." and she stood there crying, too. One friend wrote me that her "insides clutched" when she got my letter; an acquaintance told me she had "felt like throwing up" when she heard about it.

Every time someone tells us they're sad or upset for us, it's like an acknowledgment that it really happened and that it really is a Bad Thing.

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Each time this happens, I feel a tiny bit of pain being drawn out of the wounds. I feel one more thread tethering me down to reality and not letting me float off into despair.

During the sleepless nights, I go over the comments and reactions again and again. I replay the scenes in my head, and I reread the cards and letters. I feel so grateful to each person who said something or cried with me, and I wonder how I could ever have hesitated to express my sym- pathy when others I know have suffered a loss.

You, too, as the genetic c o u n s e l o r - you have kept calling, at first every few days, then every few weeks. Always you sound relaxed, unhurried, as if you had nothing better to do than listen to me for half an hour on the phone. How I appreciate that!

The other side of the coin is that when people don't say anything, or assume that it's over and that we're "all better now," or tell us how "lucky" we are - - that's like denying our anguish. Then there's a little piece of pain that does not get drawn out. With these people, I now feel that there is something unfinished, left dangling between us, and that unless we resolve it, our relationship will never be the same again.

At first I resisted going to a support group. "I don't need that; I can handle this alone," I thought. Then I changed my mind and have now at- tended a couple of meetings, together with another of your patients. The advantage of going to the support group is that the other people there are also struggling along "in molasses." Listening to their reactions, bizarre thoughts, and grief confirms that I'm not crazy for feeling the way I do. There in the group, I don't have to explain or justify anything.

AFTER SEVERAL MONTHS

P l a n n i n g Another Pregnancy

What about the future? Will we "try again"? For now, the advice you gave us seems right. You said, "I recommend that you not try to decide that now. Don' t even have a serious discussion with each other about this for a while." Well, we haven't. And I have a strange sensation that I know what our decision will be but that I cannot possibly make that decision now. I dread the second wait for results (a sure thing) almost more than a possible second abortion (very unlikely).

As for the decision itself, the decision whether to try aga in - -we l l , for one thing, we really did want another child. As painful as the abortion and loss have been, I don't think in the long run the anguish will undo that desire. Also, in a peculiar way, not to try again would invalidate what we have gone through. I feel I owe it to myself, to my husband, to our

68 Green

living children, and even to "her," the aborted fetus, to say, "Yes, we really meant it." Otherwise, it would be like saying, "Well, it's all for the best. We didn't really want another child."

My perception of risks has changed. When one looks at a group of a hundred or a thousand women of a certain age, it makes sense to say, "About 1% of these women will get a bad outcome on an amniocentesis." But for me as an individual woman facing another pregnancy, the risk, at the emotional level, is simply 50%. That is, a bad outcome either will hap- pen again or won't.

I've also thought about whether I will choose amniocentesis or cho- rionic villous sampling (CVS), if I do get pregnant again. It is easier to wait 11 or 12 weeks for results than 4 months, and it must be a little bit easier to accept the loss of a baby earlier in the pregnancy. However, the loss, when there is one, may not be that much less agonizing (see, for ex- ample, "Brown," 1989). One distinct disadvantage is that it may be more tempting for the woman to hide the whole experience from others and to underplay its importance for herself than for a woman who, like me, has undergone the later abortion. I guess I'll wait and make that decision if and when the time comes.

Ongoing Grief

All of my wanted pregnancies have knitted themselves into every nook and cranny of my awareness and my body. I could go around being a suc- cessful professional woman, teaching, traveling, speaking at meetings, etc., and always somewhere in my consciousness was this little song: "I 'm preg- nant (tra-la-la)." This is maybe why it's all so different for my husband. He was very happy about the pregnancy, and in fact did not share my mixed feelings during the first trimester. But when he was at work, doing other stuff, talking to people, etc., he didn't carry around a constant awareness of the pregnancy, the way I did.

Now this pregnancy has been wrenched and torn out of all these same nooks and crannies, and it hurts. I 'm a big open wound, dripping torn tissue and blood all over. I wonder sometimes that other people can look at me and talk to me normally, ignoring the blood.

I've lost a lot of weight. I feel slightly nauseous much of the time. Part of it is a bitter feeling that if I can't by God be pregnant, getting rounder every day, then I will by God be thin.

Recently I read something by a woman whose husband had died. She said it was a whole year before she could let herself remember the good and happy years they had had together. I was startled. It had never oc- curred to me to look back on the good parts of the pregnancy, or to think

Letter to a Genetic Counse lor 69

about it with anything but pain. Now I find the idea strange but appealing. Tentatively, I explore. I let myself remember how happy I was, how proud of being pregnant and proud of the two of us for having the courage to do this. I also try giving myself credit for all the care and love which I gave the baby in those four-and-a-half months. It's a curious sensation, and I 'm not sure how I feel about thinking this way.

I have been changed by this horrible event. I've become more open, more emotional, more accepting. For the first time in my adult life, I have been "out of con t ro l " - -ve ry strange. A part of me has opened up that I didn't know existed. "As if a curtain has been drawn back?" someone sug- gested. No, more as if a door that was locked and barred has suddenly and forcibly been flung open. Accepting these changes is part of how I can remember what happened, how I can "accept, yet not forget" our loss (Ilse, 1990).

I still have the karyotype and the one ultrasound picture of the baby which we took (surreptitiously) from the abortion clinic. Periodically, I take them out and look at them. They are all we have left of our baby.

And still sometimes it hits me all over again, fresh, like a nauseating punch in the stomach. All over again, I cry in shock and disbelief, "This isn't the way it's supposed to be! I'm supposed to be pregnant now!"

Yours sincerely, Rose Green

POSTSCRIPT (written several years later)

K, I have deliberately left my letter as I wrote it then, ending on a somber note rather than an upbeat one, because if you want the letter to be helpful to other patients, and to their genetic counselors, you have to deal with the pain at the time. The cliche is that time heals all wounds, and for me now, I have certainly healed a great deal. Also, I have had another baby and am of course enthralled and enchanted with this new person. However, my new baby does not "replace" that one, as if they were interchangeable machine parts. Moreover, the pain and loss which I expe- rienced from the abortion were searing, much worse than I had imagined they could be. This is what I have tried to convey in my letter.

RG

ACKNOWLEDGMENTS

Several people - -genet ic counselors, colleagues, family, and friends - - read and commented on this manuscript. Without their encouragement, it would not have been published.

70 Green

R E F E R E N C E S

"Brown J" (a pseudonym) (1989) The choice. J Am Med Assoc 262:2735. Hodge SE (1989) Waiting for the amniocentesis. New Engl J Med 320:63-64. Ilse S (1990) Empty Arms: Coping with Miscarriage, Stillbirth and lnfant Death (Rev Ed). Maple

Plain, Minnesota: Wintergreen Press. Nilsson L (1989) A Child is Born (Rev Ed). New York: Dover. Richter E (1986) Losing Someone You Love: When a Brother or Sister Dies. New York: Putnam,

pp 21-23. Rothman BK (1987) The Tentative Pregnancy: Prenatal Diagnosis and the Future of Motherhood:

Grieving the Genetic Defect (Chap 7). New York: Penguin.

A D D I T I O N A L R E A D I N G S 3

Borg S, Lasker J (1989) When Pregnancy Fails: Families Coping with Miscarriage, Stillbirth, and Infant Death: Prenatal Diagnosis and the Unwanted Abortion (2nd Ed, Chap 4). Des Plaines: Bantam.

Gatlin S (1985) Some psychosocial ramifications of abortion for genetic reasons. J Perinatol 5:7-11.

Granat D (1991) Precious lives--painful choices. The Washingtonian Jan:94-97, 164-171. Maloy K (1988) A matter of life and love: One woman's story. New Woman Sept:66-71. Minnick MA, Delp KJ (1990) A Time to Decide, A Time to Heal East Lansing: Pineapple

Press. Rapp R (1984) The ethics of choice. Ms. Aprih97-100. Scrimshaw SCM, March DMS (1984) "I had a baby sister but she only lasted one day." J A m

Med Assoc 251:732-733.

3All these include personal experiences.