Pondering My Choice

Diagnosis: Trisomy 21

By Michelle

The idea of a third son was always in the back of my mind ever since my sister visited the psychic all those years ago and was told that I would find happiness with an older man and have three sons. Well, it had almost come true. I was happily married to a man ten years my senior and I had two wonderful sons, ages ten and seven. Now at age 43, I figured my child-bearing years were through and yet still I wondered.

I'd had infertility problems and was grateful for my two sons. During the eight years of my first marriage I failed to conceive due to a number of problems. Later when that marriage ended, I figured that it was for the best. It took two years with my second husband until our first son was conceived. Three years later, after almost giving up, our second son was born. My husband was satisfied with our two and I had a nagging idea that it might be socially irresponsible to bring more children into an already overpopulated world. But when my cousin announced her third pregnancy at Christmas in 1999, I began longing for a third child too.

That year, against my husband’s wishes, I decided to discontinue the birth control shots I was receiving. “I only have a 2% chance of getting pregnant anyway,” I explained to my husband, “if it happens, it happens.” Then in July 2004, after five years, it finally happened.

Following three days of continuous nausea, it dawned on me, “I’ve been here before. I know what this is.” I bought an over-the-counter pregnancy test and wasn’t a bit surprised when I saw the red line. I could hardly contain my excitement. Sure, there would have to be a lot of changes for all of us but it would all be so worth it! I shared the news with the boys first. My older son was thrilled. The younger had some reservations, climbing into my lap saying, "You’ll forget all about me.”"

Next I told my husband. His response was less than enthusiastic. In fact, he was down right angry. He ranted, “I am 53 years old! Don’t you think I want to retire someday? We can’t have this baby!” But once I pointed out that his own beloved youngest brother was born when his mother was 44 and he was 11 years old and that I would be 44 and our older son 11 when the baby was due in the spring, he settled down a bit. He began to accept the idea of another child, eventually growing to look forward to the new family addition. It really looked as though this baby was meant to be.

My husband and I discussed the risk of Down syndrome and agreed to have testing and to terminate the pregnancy should the baby have a chromosomal disorder. Deep down inside, I wondered if I could really go through with that. I had always believed it would be impossible for me to ever terminate any pregnancy for any reason.

Looking back now, I wonder if I had something of a premonition of what was to come. From the start, I told my extended family that no one was permitted to buy anything for this new baby until he was born and we were certain that he had “made it.” I was sorely tempted to shop in baby stores and browse through catalogs but I forbade myself. I knew that if I lost the child after having bought all sorts of adorable baby things, my sorrow would be compounded.

I tried not to let myself dream of the baby and tried not to picture the family doing things in the future with a new little addition. When we spoke of the baby with the children, we always said, “if the baby makes it.” But the dreams came any way. My older son is so good with young children. I could hardly wait to watch him interacting with his own baby brother. I imagined our family doing all the things we love, camping, boating, skiing, hiking, riding roller coasters - all with our new little child.

At 14 weeks I saw the baby by ultrasound for the first time. As early as it was the technician could see he was a boy my little third son: Another a hunter of tadpoles, tracker of mud, maker of noise, digger of dirt, racer of bicycles, pitcher of fast balls, breaker of windows a boy. He was already very active though I couldn’t feel him moving.

At 16 weeks, I broke down and bought some maternity clothes. I had only one pair of regular slacks I could still fit into. I also bought the baby a sweater. While I was making these purchases I had an uneasy almost guilty feeling that I was doing something wrong. This same week I began feeling the baby move within. My quad screen came back that week too and the news wasn’'t good but not bad either. There was a 1 in 49 chance of Down syndrome. It was better than the 1 in 32 for my age group.

My doctor tried to change my appointment for a genetic ultrasound but there were no openings before my 18th week. I spent an uneasy two weeks waiting while trying to convince myself that my mind would be set at ease. During the level II genetic ultrasound the technician quietly examined the baby. I could see my tiny boy on the monitor. The technically advanced machine allowed for an intricate examination of the baby’s skeletal system. I found it ominous that the baby did not appear as a flesh-covered baby but rather like a skeleton. I felt a sense of foreboding. At last the technician called the doctor into the room. The two seemed grim as they conferred quietly together.

Finally, the doctor spoke to me. He pointed out calcium deposits on the baby’s heart and dilated ureters, explaining that these are signs associated with Down syndrome. When I asked if he recommended the amniocentesis test, he said only that it was my decision but that the information I would gain outweighed the risks.

I signed the release forms and the test was performed immediately. Though I was very afraid and was shaking the entire time, I experienced only mild cramping and no pain during the insertion of the needle and extraction of amniotic fluid. When the doctor had finished he told me I would have the results in approximately seven days.

I went home with several sonogram pictures of my baby’s skeleton. At this point I was still quite hopeful that the test would reveal a normal, healthy baby. I visited my aunt the next evening, a Friday, and attended my sister’s birthday celebration that Saturday. Sunday, I helped my older son crochet a little cap for the baby. On Monday, I searched the Internet for information regarding the “soft signs” for Down syndrome. The more I read the more my anxiety increased.

Though the doctor never mentioned nuchal fold translucency, I found information and saw immediately that my baby had the thickened fold. It was so obvious when I compared his sonogram pictures to those of the normal babies’ and Down syndrome babies’ sonograms I found at websites.

By Wednesday, my heart had sunk. I was increasingly certain that my baby had Trisomy 21, Down syndrome. By this time I had been crying off and on for three days. When my husband and children asked what was wrong I answered that I was worried about the baby. I spoke to my husband in private and revealed the latest information.

He was livid! He screamed at me, “You messed up once by getting pregnant. Now you messed up again.” He acted as though it was my fault that the baby had Down syndrome. In way it was. After all, I knew the risks of getting pregnant at age 43. When he calmed down we reaffirmed our decision to terminate the pregnancy if the test proved positive.

I prayed as I have never prayed before in my life. As a Christian I prayed in the name of Jesus. I prayed over and over that my baby would be normal. I had spent years fueling my faith with stories of miracles from inspirational magazines. Now I needed a miracle but the telephone call came with the dreaded news anyway. Where was my miracle? Where was my baby'’s miracle? My faith is forever changed. I haven'’t abandoned it completely but it is evolving. I will never have childlike trust in a protective, patriarchal God again.

I have little physical evidence of my son. In the wake receiving the bad news, I burned all but one little sonogram picture. I saved only the one taken before there was any indication of problems. I packed up all the maternity clothes I had purchased and donated them to the local shelter for unwed mothers. I destroyed the little crocheted cap. I threw the tiny sweater away.

I knew nothing of my options at the time I was forced to make my heart breaking choice. Due to scar tissue from two previous C-sections, I could not go through labor and delivery but instead went into an anesthetized sleep from which I awoke with no baby inside. I have no birth certificate, no death certificate, nothing to prove he ever lived. I was told that his remains would be cremated and buried in common ground by a funeral director who was under contract with the hospital. I have no ashes in an urn to display or to hide in a secret place, no gravesite to visit or to decorate with the passing seasons.

Over and over I still wonder how I could ever have terminated any pregnancy. This was so against everything I ever believed in. I never thought this would be a choice I would make. I considered so many things. Anyone making such a choice will have personal reasons. I had several.

I searched the Internet for information on the disability. Some of what I read was quite hopeful but I also read many things that broke my heart. There are so many complications associated with Down syndrome and there was no way of knowing which or how many of these may affect our son. Our baby would have a tough and painful life ahead of him if we chose to continue the pregnancy.

I considered my husband. He loves me and our children and works incredibly hard to provide us with a good living. However, he is not a patient man and often has outbursts of anger. Our boys have learned to tune him out most of the time, just as I have done. But I had to consider how such almost daily "ranting and raving" might affect a little mentally retarded child with a limited ability to understand or process such chaotic behavior. I pictured my husband in one of his moods, scolding and lecturing, while I tried desperately to comfort and console our distraught and confused retarded son. I rejected this picture.

My husband, as an above knee amputee, is disabled himself. He lost his leg over 33 years ago in an accident. He uses a prosthetic leg, which is often painful. After years of having to walk using different muscles he has damaged his back. He basically has had a good life and is content with his business, our home and our children but he also suffers intense disappointment and pain, both physical and emotional due to his disability. He is often frustrated when he is unable to engage in active play with our boys. His physical pain often results in his grouchy moods or forces him to take to bed. He is also prone to binge drinking when in pain or under stress. He has enough difficulty caring for himself without the extra burden of a disabled child. I pictured my husband further stressed by the monetary, physical, and emotional expenses of caring for a disabled child. I rejected this picture.

I considered our two boys. I had to think of how bringing this new little life into the family would affect them. They demand quite a lot of parental attention, as do all children. A child with Down syndrome would need even more time and attention. I thought of all of the extra time spent in taking our son with Down syndrome to clinics for various therapies and interventions, and in implementing them at home. I thought of all the time that would have been spent at doctors’ offices and hospitals treating his various conditions. All this would be time away from our older boys. I pictured the resentment that could build in them as they began to feel neglected. I rejected this picture.

I considered myself. Facing up to one's own weaknesses is never easy. I am not the most disciplined of persons. I was forced to admit that I would be unable to properly provide for my son’'s needs. As a child with Down syndrome he would need a regimented routine, complete with at-home therapies. I know that I would begin these with good intentions but inevitably fail. I pictured my failings and their adverse affects on my little boy. I rejected this picture.

I looked into the future, my baby’s future. I found numerous websites created by the loving parents of children with Down syndrome. Most of these adorable children appeared to be mildly affected and seemed to be living happy, loving and fulfilling lives. I have no doubt that I would have loved my third son every bit as much as I love my other sons. I feel certain that he would have also been capable of loving me in return. Perhaps he would have been only mildly affected. I pictured him as a child, playing with his brothers, and as an adult, holding down a job such as the Down syndrome affected bagger at our local grocery store. This was a picture I could live with. I could hope for the best.

Yet the more research I did, the more I realized that there was no way to predict the severity of his condition. At a minimum he would have suffered the mental retardation and the physical characteristics of Down syndrome. No matter how mildly affected, he still would never have been normal. Yet, this was the best I could hope for.

I thought about the five people of varying ages with Down syndrome that I have been acquainted with. Of these, two do not speak or interact much with others, one died young and the other two hold menial jobs. I pictured my son suffering physical ailments associated with Down syndrome and dying young, or alternatively living to adulthood uncommunicative or marginally functioning and lonely. I rejected this picture too.

Many women in my position insist that they never once thought of themselves in making their heart breaking decisions. I must be honest. I did consider myself.

I have dealt first-hand with the learning disability of my older son. I spent years of frustration getting a diagnosis and fighting the school system for remediation and special education. We spent a fair amount of money on alternative therapies and educational aids, even traveling out-of- state, reaching for whatever promises the latest theories might offer. I have been drained by the exorbitant amount of time involved in working with him at home. I know too well the sleepless nights, crying in the dark, wondering what I can do to "fix" his problems or heal his hurt when other children taunt him. And this is a mild disability! I pictured how much greater the disability of Down syndrome would have been, how much greater my frustration, suffering and pain. I rejected this picture.

I pictured my aunt, now in her eighties and still caring for a mentally retarded son of nearly 60. I also pictured my great-aunt, also in her eighties, caring for her 42-year old daughter with Down syndrome. Both of these elderly women have been homebound, caring for their disabled children for years. They are unable to enjoy the freedom and active lifestyle of many other senior citizens. Their lives have been consumed by the care of others. This sort of self-sacrifice may be viewed as noble. But I am forced to admit that I am too selfish for this. I want to live my life unfettered by such a burden. I pictured myself in old age, isolated, with only my retarded son for company. I rejected that picture.

I spoke to our priest and told him what we were considering. While he definitely did not approve, he did advise me to act in love. Ultimately, I do believe that I acted in love. In the end it came down to a decision made in love, love for third son, love for my husband, love for my children and love for myself.

I terminated my baby’s life out of my love for him. I set him free, sent him to heaven. I saved him from a life of disability including mental, physical and emotional pain.

My heartbreaking choice was made out of love for my living sons, whose lives may have been enriched by a retarded younger brother but more likely would have been disrupted and cheated. I saved them from the disruption of their family life, from the incredible stress and turmoil that would have occurred with the daily care of their brother. I also saved them from the possible burden of caring for a disabled sibling after their father and I are gone.

I acted out of love for my husband, who has troubles enough. I saved him from the further stress of caring and providing for a disabled child. I saved him from the possible downward spiral of alcoholism brought on by the added burden. I saved him from the inevitable toll on our marriage that a disabled child would have engendered.

My husband and children have resumed their lives as though nothing happened, as though we were never expecting an addition to our family and we never suffered a loss at all. They wept a few tears at first and then moved on. Mission accomplished. My baby’s sacrifice was for this, that their lives would not be affected.

In the end, I also acted out of love for myself. I freed myself of the heartbreak of caring for a disabled child. How do I deal with this? Within the waking hours of each day I am alternately sorry that I never gave my little son a chance or grateful for the medical procedures that freed us all. I am relieved that I am not the mother of a disabled child. Yet, at all times I scream inside with the agony of letting my third son go. I lie awake at night when everyone else is asleep, crying and pondering my choice. This is my comfort: I am the only one crying.


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