Loss of Our Son

Diagnosis: Trisomy 21

By a 40-Year-Old T-21 Mommy

Back when I was in my twenties, I spent a great deal of time regretting that I hadn't found "him" yet, the man who would be my husband. I reasoned that I would meet him when the time was right, yet wondered why I was remaining single, when all my friends were getting married. When I finally met my dream man, would I be too old to have the children I so wanted? These were questions that haunted me until I turned 37.

That was when I married my darling husband, who is also my best friend and the soul mate I so yearned for. Now I could finally settle down, and when we were ready, try to have a baby. Since finances weren't terrific, we waited. Finally, in June 2001, I felt ready to go off the pill, and ready my hopeful body for the other person I yearned for: my child.

On Labor Day 2002, I took a pregnancy test and finally got the news I had so long awaited: I was pregnant! At age 40, I finally got the chance of a lifetime! The thrill...the stun...the responsibility...the joy...it all heaped upon me at once. I woke my hubby up and we were both ecstatic. He has children from a former marriage, yet looked forward to our addition to our family as if it were his first. Such glee we felt!

I began seeing an Ob-Gyn on a monthly basis. He was very pleased by my overall health. I gained an average of a pound a week, and I viewed my fifth month, December, as a most special one: not only would the Holidays bring increased joy to our family, but I would soon be having my first ultrasound. I'd finally get the privilege of seeing my baby for the first time.

On December 4, 2002 my husband and I went to the medical center and saw our baby for the first time. We also found out that it was a boy. I had been positive it would be a girl, but was secretly pleased it was a boy. We were given some ultrasound pictures. One went with me everywhere. It was a head-on shot of his sweet little face, features most evident, and the inklings of his first smile for the camera. I felt as if he was looking right at us, as if to say, "See you soon!"

The ultrasound showed nothing unusual. In fact, he appeared strong and healthy. However, owing to my age (which, as I was being reminded at frequent intervals, fell under the category of "Advanced Maternal Age"), it was recommended that I have an amniocentesis, just to be on the safe side. Of course, since my pregnancy had thus far been what I construed to be "perfect," I agreed, realizing that not only would we have increased peace of mind, but that with complete 24-hour bed rest afterwards, the risk of complications afterwards would be minimal.

I welcomed the technology, and the medical advances that made parental peace of mind a more realistic thing. I reasoned that the combination of the ultrasound, the amniocentesis, and my own belief in the power of prayer - together - would get all of us through, safe and sound.

On Monday, December 9, 2002, my husband and I returned to the medical center for the amnio. I was not frightened in the least. I was brave, and felt better knowing that, during the procedure, we'd be able to keep an eye on the baby via an ultrasound camera, so I'd know that he was not in distress. What an active little guy he showed himself to be that day. He resembled a cheerleader: arms waving, legs kicking, he really looked anxious to get out of his safe cocoon and meet his parents. He had been kicking quite a bit of late, and I felt his presence a great deal. I was enjoying my pregnancy something fierce!

I was told that the results from the amniocentesis would take about two weeks to come. I was strangely confident throughout those two weeks. I felt charmed and blessed; I never, even for a country second, considered the possibility of anything being wrong with our baby.

I only thought of the future and what it would be like to be a mother, how much I would enjoy teaching him, guiding him, and being his mommy, for all time. I thanked God daily for the opportunity, and for being given such a special gift.

My next monthly appointment with my Ob-Gyn was Monday, December 23, 2002. It had been exactly two weeks since my amniocentesis, and so I kind of hoped that I would be given the word, that day, that everything was raring to go with my baby. My chief concern was how much weight I had gained the month before, and how careful I would have to be with the upcoming holidays.

My appointment started normally, with the weigh-in and urine contribution. Then my doctor entered the room stone-faced, and time stopped. He informed me that my baby had Trisomy-21, Down Syndrome.

To say that my world crashed at that moment would be understatement. My emotions collapsed, the tears came, and have not yet stopped. I, of course, asked the inevitable first question: are you sure it's my baby? Is this real? My doctor was honest, forthright, yet kind, in assuring me that the lab reports were, sad to say, correct. He let me speak, emote and vent. He gave me the chance to voice my horror, my anger, my surprise and my angst. It was what I needed at that moment.

Yet, just as animal mothers in the wild protect their young, I knew instinctively that what he was telling me. The kind of life my little boy would have, the obstacles he would face, and the pains he would sustain, were not what I wanted for him. I wanted him to grow to be anything he wanted to be, without any obstacles.

The cards he had been dealt meant that my dreams for him, my goals and my plans, would not happen and that was not good enough for my little boy. I knew, seemingly from the moment I got the diagnosis, that I would have to say a sad goodbye to my baby.

My doctor left me alone in the office for a little while. In that time, I stood up, and cried tears that were amongst the most unabashed I had ever shed. I cried from the feet up. I knew everyone outside the room could hear me, yet didn't care. I mourned from moment one and felt that sad pain that I never expected to feel. I realized, at that moment, that the charmed life I thought I was living was a most real one, complete with tragedies and loss. As much as I hated to admit it, I should have expected this, or at least prepared myself for the possibility. Yet, I hadn't.

Before I left the office, the nurse practitioner who had been with me from day one came in, and I told her of my 99% sure decision to end the pregnancy. She hugged me, and told me that she would make a phone call for me, to arrange the sad next step. I told her, of course, that I would have to call my husband, but that I was 99% sure that he'd be in agreement with me.

Leaving the office that day, I realized that, in contrast to my plans, I wouldn't be able to go to work that day. How could I? How could I explain something like this to my co-workers? I called one of my closest friends there, and told her that I was ill and probably wouldn't be in until after Christmas. Since I had sick time coming to me, this was no problem (thankfully). I went home, and tried to figure out how to tell my husband such horrible news.

I didn't want to tell him over the phone. Yet, after getting a hurried phone call from the clinic where the procedure would be done, asking for an appointment verification, I realized that I had no time to waste. I was approaching my 22nd week, and time was of the essence. That being said, I called my husband, and told him. He was quiet, vocally sullen, yet agreed that the decision I had reached was appropriate and that I had his complete support. He would come home early that day. His consistency by my side is what got me through the days to come.

Three days later, on December 26, 2002, I reported to the clinic for the beginning of the three-day procedure. In the waiting room, I was in constant tears. My husband, strong through his shock, was my rock.

I felt like I was the only one there having to end a wanted pregnancy. I think the nurses on duty that day sensed that. They were so warm and kind, hugging me, telling me that I was making the ultimate sacrifice, and giving the greatest gift of love, out of kindness to my child. I was a good mother, they told me. I was thinking about him before thinking of myself. In my head and my heart, I knew that to be true, but alongside such feelings, I was beating myself up for what I was actually doing. I never in my wildest dreams ever imagined myself having to end the pregnancy I had so long waited for. And now, in this stark building, I was doing just that.

The first night, I was inserted with the laminaria which would begin a forced dilation process. I also got a shot in my lower belly which slowly, and painlessly (I was told), would stop my baby's heartbeat. I went home, and was up all night, thinking, imagining, hoping, upon hope, that my baby wouldn't feel anything. I prayed hard that the physical pain I was feeling would be spared him - struggling through appeals to God that I be given his pain, and that my baby boy feel nothing.

I have to believe that my wish was granted, for I felt intense and steady discomfort, particularly after the second day's procedure of more laminaria inserted. That second day, too, an ultrasound confirmed that my baby, still inside me, had no heartbeat. I left, that night, knowing that I was carrying a lifeless child inside me. Never, in my whole life, did I feel lower or more lonesome.

The third day, December 28, 2002, found my husband and me at a different hospital. Three hours after I got there, I was recovering in a bed, after being generally anesthetized via IV. I was no longer pregnant. My baby boy had been removed from my body. I was bleeding rather intensely. The long three days, of which I felt every endless second, had come to an end. We told the nurses, the doctors, anyone who would listen, that we would be back for our baby's body, which we eventually had cremated. His urn, a little wooden box resembling a baby block, is now in our bedroom. He was baptized, by a kind neighborhood Catholic priest, on January 8, 2003.

It has now been almost two months since my life's worst nightmare began. In that time, I have shared our sad news with family and friends. All were told simply that our baby's heartbeat had stopped and have received nothing but support and love. Why not tell the truth? Simple. To spare our parents, our loved ones, and our pals, the further sadness of what might have been. My husband and I agreed that by letting everyone know of the Down Syndrome reality, we'd be compounding their grief, and opening ourselves up to those who might disagree with our decision. In our hearts, my husband and I know we did the right thing. We all know that there are those who will say that we did not. We chose to spare ourselves, and others, any further pain.

In the time that has passed since my baby's death, I have had a lot of time to think. The inevitable questions: Could I have done anything to prevent this? What did I do wrong? Why did this have to happen? have been asked over and over in my mind. And, as much as I need answers, there are none.

I have helped myself through this horrible experience by reasoning in this way: God needed my son more than I did. My baby boy was whisked back to Heaven, his spirit soaring towards a higher purpose. I have planted thoughts in my head that perhaps he was really meant to be born somewhere else, where he could do more good as an adult. Maybe Heaven needed a really special Guardian Angel. I'm doing whatever I can, in order to cope, to heal, and to try to understand, even where there are no actual answers.

I am still tearful, still mournful, yet slowly recovering. I can smile and giggle now, much like my nature. Yet when I see new mothers and their babies, I can't help but get weepy. When I gaze at mothers, I ask myself why they were granted their children, and not me. When I look in my closet, at the pretty jumpers and pregnancy garb I purchased, I turn away from them. When I look down at my belly, now relatively back to normal, I miss that plumpness, that presence. When I am saddest, and feeling most low, I find myself talking to my baby boy, just as I had been doing from the moment I became pregnant.

I ask him, day in and day out, for forgiveness. I ask him to understand that what I did, I did out of love. I beg his understanding that my thoughts were solely of him, that I wanted to spare him the potential (and probable) illnesses and difficulties he would face, that I wished him to live a life free of mental anguish, and that I hoped he would still think of me as his mother. No matter what, I went through those hellish three days, ending the pregnancy that I so cherished, out of concern for him and not for myself.

I never contemplated the challenges of mothering him. I thought only of his life, and how wonderful I wanted it to be. And, if my baby boy couldn't have full mental and physical capacities, if he were to suffer, if he were to wonder why he was different, if he were to endure any pain, how could I not spare him that discomfort?

In short, I still do consider myself a mother, and a good one. I do look at myself in the mirror day after day and know in my heart that I did the right thing. Yes, the inevitable guilt is still there, and probably always will be. I will miss my son until the day I die. I will yearn for him, want to hold him and want to protect him. In the most painful way possible I did just that - I protected my child from harm. And in that knowledge I will find ultimate peace.

In sharing my sad story I hope that others, women like me who find themselves not wanting to end their pregnancies, but having to do it, will find solace in the fact that we are not alone. I felt terribly alone, singularly horrified and filled with self-loathing. However, in sharing my story and reading those of others, I realize that there are lots of us out there. We have one basic, unmovable, and unforgettable thing in common: we are all mothers. And, though we don't have our babies with us here on earth, they are most alive in spirit, and in us. In celebrating them, remembering them and never regretting our ultimate act of love - they remain forever alive, and forever young.


Books on Loss and Grief

Our Heartbreaking Choices: Forty-Six Women Share Their Stories of Interrupting a Much-Wanted Pregnancy

The Dive :: A Memoir

A Time to Decide a Time to Heal: For Parents Making Difficult Decisions About Babies They Love

Precious Lives Painful Choices: A Prenatal Decision-Making Guide

Sunshine After the Storm: A Survival Guide for the Grieving Mother

Empty Cradle, Broken Heart, Revised Edition: Surviving the Death of Your Baby

Empty Arms: Coping With Miscarriage, Stillbirth and Infant Death

A Silent Sorrow: Pregnancy Loss

Unspeakable Losses: Healing From Miscarriage, Abortion, And Other Pregnancy Loss

Surviving Pregnancy Loss: A Complete Sourcebook for Women and Their Families

Difficult Decisions: For Families Whose Unborn Baby Has a Serious Problem

Books for Fathers, Family, Children and Friends

Couple Communication After a Baby Dies: Differing Perspectives

For Better or Worse: For Couples Whose Child Has Died

How to Say it When You Don't Know What to Say: The Right Words For Difficult Times

A Guide For Fathers: When A Baby Dies

When Your Friend's Child Dies: A Guide to Being a Thoughtful and Caring Friend

When Pregnancy Fails: Families Coping with Miscarriage, Stillbirth, and Infant Death

What You Can Say When You Don't Know What to Say: Reaching Out to Those Who Hurt

Books about Trying Again and Pregnancy after Loss

Journeys: Stories of Pregnancy After Loss

Trying Again: A Guide to Pregnancy After Miscarriage, Stillbirth, and Infant Loss

Pregnancy After a Loss: A Guide to Pregnancy After a Miscarriage, Stillbirth, or Infant Death