A Collapsed Dream

Diagnosis: Heart malformations and serious chromosomal disorders

By Anonymous

I am luckier than some in that I have three sons from a previous marriage, ages 12, 10, and 8. In some ways this has made the attempt at getting pregnant after having my tubes tied even harder emotionally. I am remarried to a man younger than me who has no children. He is such a good stepparent and tolerates so much from them and from my ex-husband.

Because I have these sons, in a way, I know what sacrifice my dear husband has made to be with me: he may never know the joy I feel in my sons. I feel such terrible guilt that he wants a child of his own and I seem unable to give him one. So I was willing to do whatever it took to give him a child.

When I was 38, I had a lengthy surgery (about five hours) to reattach my tubes. My husband didn't want to do IVF, and my fertility seemed proven. We expected to be pregnant within a month or two. That was about two and a half years ago. The treatments got progressively more invasive. We did six rounds of clomid with IUIs. Nothing. We tried ourselves on the between months. Then we tried a few rounds of injectibles with IUI. No pregnancy. The HSG test showed the tubes were open, but the doctors said perhaps there was scar tissue, or the tubes were too narrow, or maybe it was just my age. They said since we were doing injectibles anyway, why not move on to IVF? Finally, my husband gave in.

The first IVF procedure was cancelled the day before retrieval. Finally, on the second IVF go-round, we got pregnant in June. I had worked so hard, had so many shots, so many blood test, so much pain, anxiety and anguish, but it had finally paid off!

I was pretty ill with lots of throwing up, but I'd had that with my sons and I knew it was all for good cause. What I couldn't shake was my terrible sense that something was wrong. I thought maybe I was just having some kind of stress reaction or maybe the progesterone I was on was making me think weird - the drugs often made me extremely anxious and tense - but it turned out my concern was for good reason.

Then came the World Trade Center disaster and everybody's world got turned upside down. I was home the day of the disaster and saw the event live on TV. I had three relatives within two blocks of the WTC. One, my brother, was in a building right next to one of the collapsed towers. His building was so damaged that he has not yet been allowed to return to it. I lost no one in the WTC, but spent literally hours and hundred of phone calls (it took sometimes 30-40 tries to get through) to family and friends in the city and in north Jersey to locate my family members. My brother wasn't able to be in contact until about 5:00 p.m. that day.

It was a horrible day and I recall being on the phone with my mother while the first tower collapsed. There was no reassuring commentary by a journalist; they were saying exactly what I was saying, "Oh my God, I don't believe it, but I think the tower just collapsed." My mother on the other end of the phone spoke back to me in a voice I'd never heard from her. I don't know what she said, but her tone, her fear will always be with me. We both knew Steven was next door to it. We would later find out that Steven was fine, but he saw terrible things: Bodies plummeting to earth as people jumped off the building and splattering on the sidewalk. The family has rallied around him so he could process his stories, but they are just awful!

But at that moment, as the first tower collapsed, I felt as if I had been punched in the stomach, and I doubled over in tears. My mother hung up to go out into her parking lot from which she could see the towers in the distance. I started having terrible cramps and took two Tylenol, praying that the baby wouldn't die.

I was frightened for the baby, but as it turns out the loss of it was totally unrelated to the stress. Three weeks after the WTC disaster, we got the news that our baby was a girl with a serious chromosomal disorder. She had a 99% chance of death before birth. I was 14 weeks pregnant when we had to make the heart-breaking choice to control what seemed inevitable and terminate.

I teach at a college about an hour and fifteen minutes away. We were so afraid that something would happen while I was on the road or in class. We felt the need to minimize the horror of it all, but choosing to not go after that 1% possibility was so hard! Was there any way? The doctors all assured us that if this child lived she would have a horrendous life.

The worst thing is, as I'm sure so many AHC women and couples have experienced, was being given the news. I recall it in slow motion. Because of my age, I was seeing a perinatologist for a 12-week nuchal translucency test. The regular technician started the US and got very quiet. I was so terrified that something was wrong already, but her face just made my gut ache. She wouldn't put our video tape in; she didn't do the gentle patter of conversation that I recalled when I had US in my early thirties with my sons. She just got really quiet and said she'd be back in a few minutes with the perinatologist. I sat up on the table, sopping with sweat and so agitated. My husband was immobile. He didn't understand and I couldn't communicate how I was feeling.

It seemed like 20 minutes, but it was probably 10, when the doctor came in and started a vaginal US. I had had probably close to 150 of these over our years of fertility monitoring, so when the doctor was going slow, trying to be gentle, I begged him to hurry. I wanted an answer. The doctor spent about another 30-40 minutes doing the US. I kept asking him what was taking so long. He said, "Please be patient and be still. I know this is hard. I promise to be totally honest with you when I'm all done. I want to be be really sure about what we're looking at."

He was really a nice doctor and we saw him three times in the next several days and had many phone calls with him, but you can imagine how what he said made me feel. I was dumbfounded. When he was done he explained that our NT was over 10mm which is huge and a major indicator of a number of serious problems. He said the heart was malformed, too. It took me so long to absorb what he was telling us. I just sat on the edge of the table shaking and utterly devastated.

The doctor and nurse finally left us with a number of options and I just collapsed into my husband's arms in tears. Two of my sons were in the waiting room. One of them was so happy we'd be having a baby. My sons really experienced the infertility journey with us, always driving an hour to the doctor's office for monitoring or blood-work, mommy always being sore or irritable or tired. Now, I had to walk out of the US room with my face all puffy and try to figure out how to break things gently to the children. We just told them the baby was sick.

We spent the weekend on the phone with family and friends and doing research. When we finally found out the diagnosis, we were unsure how to proceed, but the perinatologist said that he estimated a 99% chance of death before birth and that he felt it would happen before the end of the second trimester. We saw him some more. We saw the OB. It seems like it was all a blur, but three weeks after the WTC, I found myself in the hospital crying my eyes out as they wheeled me in for a D and E.

I was back to school within a week. It was the worst semester I ever experienced in terms of student stress and problems, and I was grappling with my own. I have never seen students so anxious, stressed, depressed. There were three suicides that I'm aware of, two students who miscarried, a host of issues. I believe that much of this was due to the low level, unrelieved anxiety we've all been feeling. Whatever cracks there were in people's lives seem to have been widened on September 11th, 2001.

As for me, I was managing until just after Thanksgiving when we began IVF again. I had such a terrible physical and emotional reaction that we had to quit. It soon became apparent to me that I had just started to grieve. I started having terrible anxiety and panic attacks, and only now, after Christmas, have I really started to cry, to let it out, and only when the children aren't home.

I am seeing a grief counselor who explains that I got hit on the macrocosm and the microcosm in the same month; my innocence, my dreams were all collapsed in a short period of time. He says I still have depression to go through, but I am being as pro-active as I can. I am exercising every day and have taken up knitting again to soothe me at night. Funny, my boys love to sit and watch me knit. I am searching for info on grief and was so grateful to find this site where I felt, yes, there are others who understand this process, this awful guilt, this collapsed dream.

Grief is apparently one of the important life passages and part of moving towards a real adulthood. I suppose it gives me a certain hope to know this will move me towards maturity. I think I was lucky to keep innocence so long. I've just turned 41 and, as painful as things are right now, I can see that I will be a better, more compassionate person when I come out on the other side of this.

As for IVF, I just don't know if I can do it again, which leaves me knowing my husband may never have a child of his own. I guess it is part of maturity to realize you can not protect your loved ones from pain, even when you are the one causing the pain.

I hope that my story might help someone else process their grief as the stories on this site have helped me. I send love and light and hope to you if you are reading this. You're not alone. The grip of pain will lessen; you will understand others' pain and grief better for your experience. This may be only small solace, but I believe that is a tiny gift , learning compassion and forgiveness for others through our own life's passages. Let yourself be consoled by others, and console those you meet in life who are in pain. We are not alone unless we let ourselves be.


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