Our First Son

Diagnosis: Trisomy 18

By His Loving Mother

Today is my son’s due date and, as if it were meant to be, I found this website. Funny, I never noticed it before perhaps my mind is trying to forget what my husband refers to as “the unpleasantness.” Let me rewind the tape a bit and tell you a little bit about us, before I share my story.

We are newlyweds. I’m 34, my husband is 29 well, really 30 today. Yes, my husband’'s birthday and our son's due date are the same date. We'’re complete opposites in some respects, but have much in common (e.g. We both love movies and are perfectly happy snuggling at home in front of the TV. We’'re both Christians and our families are important to us).

At our wedding, people talked about our future children and we were often told that our kids would be beautiful. So after having a glorious wedding on St. Croix and honeymoon in St. John, we set forth to conceive our first child. We wanted to get started right away given my age.

It took only three months for us to get pregnant. I’'m convinced that our baby was conceived on Christmas Eve 2002. My pregnancy was initially quite uneventful. I had some mild nausea. We heard our baby'’s heartbeat on schedule. I even had those initial “flutters” earlier than expected. I had my moods, nesting frenzy and cravings just like any other pregnant woman. My husband nicknamed our baby “split pea.” It was perfect.

We were looking forward to our 18-week ultrasound because we wanted to find out the gender. We went in for it as scheduled, but somehow, I had scheduled it too early. The technician said, “That’s a small baby.” She sent me home and had me reschedule. I stressed that day as the words “small baby” stuck in my head. My husband said, “Of course the baby looked small, you were there too early.” I told him he was right and dismissed the comment. In retrospect, it was a huge warning of what was to come.

We returned for the ultrasound as scheduled and the technician spent hours on me. This was my first pregnancy so I had no concept of what a “ normal ultrasound” was like. After she was done, she had my husband come in and she told us the gender and let us watch our baby on the screen. I wish I could describe the look on my husband’s face when he found out it was a boy. It was priceless. She gave us some pictures and sent us on our way. We were on “cloud nine” as we walked out of the hospital until the technician rounded the corner and asked us to wait as the radiologist wanted to speak to us. Thus, began "the unpleasantness.”"

After making us wait an eternity, he had a change of heart, told us to go home and call my ob/gyn tomorrow. I refused. I insisted that he speak to us. In turn, he simply had his technician page my doctor so she could talk to me. Wimp. (Needless to say, I will not be returning to this hospital for an ultrasound. I reported my bad experience with that doctor.) My ob/gyn told me over the phone that the radiologist noted what seemed to be a clubfoot and an omphalocele.

Tears streamed down my face as I relayed the information to my husband. I held it together while on the phone with my doctor, but after I hung up I burst in tears. Both my husband and I were crying in the waiting area. Our bubble was burst. I left in denial. My husband immediately started researching both diagnoses on the Internet. He tried to talk to me. I told him, “maybe it’'s a mistake. Until I know for sure, I don’t want to talk about it.” My doctor scheduled a Level II ultrasound within 24 hours. God bless her.

This was a completely different experience. There was a technician, specialist and genetic counselor. Everyone was warm, patient and understanding. I was often asked if I was okay as they meticulously and methodically checked every single part of my baby’'s body. As time passed, it became painfully clear that something was very, very wrong. Especially when the specialist came it to review the technician’s work.

They were debating about his foot, but this was the least of the concerns. The specialist sat us down and explained that our son had a constellation of problems, which seemed to point to a genetic anomaly. He had problems with just about every major organ in his body. His brain was abnormal as well as his spine. Also, he also had facial malformations, particularly his chin. He had missing walls in his heart chambers. He did have an omphalocele. In fact, it was a giant one. It was so big that the hole extended up to his sternum and part of his heart was beating outside of his chest. There were also penile malformations and he had a clubfoot. He said there were possible kidney problems, but he couldn’t confirm it.

The prognosis was poor. He said that if any of these problems stood alone, they could be addressed after birth, but given the constellation of problems, that they were incompatible with life. If he did make it past age one, he said that his life would not be, as we know it and would be shortened. I remained composed during the entire meeting. We agreed to amniocentesis that same day to confirm the suspected diagnosis: Trisomy 18. Other than the initial pinch when the needle entered by abdomen, it was painless.

A wave of peace seemed to envelope us that day. For us, the right choice was painfully clear. My husband and I decided to interrupt the pregnancy within 24 hours. We believe that God gave us the power of choice and free will. And so we decided to give our son back to him so that he would not suffer. A week later, the diagnosis was confirmed. It was full Trisomy 18, an extra 18th chromosome.

The positive side to this was that it wasn’t translocational Trisomy 18 so we were not carriers. It was just a fluke of nature. We had the same chance as everyone else in the world of having this happen again. We had to call our family and close friends to tell them the bad news. Shock, tears, soft voices, lots of “I'’m so sorry.” Everyone was very supportive. An appointment was scheduled with a doctor the specialist highly recommended to do a D&E. Apparently, no one in the area did inductions. I want to describe this experience for those of you who may be contemplating this decision.

This place was in an impoverished area and was incredibly depressing from the outside. I almost wanted to turn around and leave. Inside, they escorted us to a special waiting area away from the other people who were there for terminations of unwanted pregnancies. This private room was comfortable. Everyone was very nice to us. It was obvious that they all knew about our circumstance. The doctor told us that he had done thousands of terminations. He also told us that his first baby had Trisomy 18 and that his wife had elected to interrupt the pregnancy. They went on to have healthy babies.

He said he was going to do a D&E, described the procedure and answered all of our questions. We were told that he would cut our baby’s umbilical cord prior to the D&E to stop the heart from beating. We felt reassured that this doctor knew what he was doing and that we were in good hands. He then had us go into an examination room. I disrobed (bottom only) and he inserted one (I think) laminaria to begin dilating my cervix. Yes, this did hurt.

When I stood up, amniotic fluid and blood began to stream down my legs. My husband’s eyes filled with tears. I tried to stay calm and told him “I'’m okay.” I was given a pad to wear. I was then very dizzy. I was told this was normal. We were told to come back the next day to insert more laminarias. He wanted to make sure I was sufficiently dilated as he hoped to have our little one come out whole (at the specialist’s request) to do an autopsy. He couldn’'t make any promises though as his priority was my physical safety and preserving my future reproductive capacity. He handed us his home phone number.

We returned the next day. Everyone asked how we were doing and gave us lots of hugs. This visit was the kicker in terms of the pain factor. He inserted several laminarias this time and I winced in pain with each one. That night, I ran a fever and was in significant pain. It never got bad enough to call the doctor. I was in tears the next day as I was having what may have been contractions. I was in so much pain I started to do Lamaze breathing in the car on the way to the doctor’s office! When they asked me how I was, I told them “"Not good."”

In the private room, my husband and I prayed, and I was lead to the exam room. I was given anesthesia. The next thing I knew, I was sitting back in the private room with my husband. He said I was only gone for maybe 10 minutes. He was able to remove our baby whole. We chose to have him buried along with the other babies. We left when I was strong enough to stand up and walk. My baby was gone, May 2, 2003.

The days and weeks that followed were physically and emotionally painful. I was recovering from the procedure and dealing with all of the feelings that flooded in. I know I had disassociated towards the end of the procedure in order to cope and I felt guilty about that. All sorts of what if'’s and should have'’s crossed my mind. Did we make a good choice? Should we have had him buried ourselves? Why did this happen to us?

We became closer after this experience. I pushed myself to process all of my feelings. I read A Time to Decide, A Time to Heal, “placed his ultrasound pictures in an album, created a memory book, and placed all of his belongings in a blue memory box. We named him. I spoke to friends. As time passed, we began to heal. I was stuck on one thing - should we have seen our baby? There was a passage in the above-mentioned book that helped me get unstuck. someone wrote that if she had seen her baby, it would not have changed her pain. She was right.

And here I am today, at 2:35 a.m., pounding away at this keyboard, needing to share my story. Needing to let other people know that my baby was real and that he was wanted. He was our wished-for child. We loved him too much to let him stay with us. We miss him. We will never forget him. He will always be remembered as our first son. We expect to see him again in heaven. If we had to do it all over again, we would have made the same decision.

My only regrets had to do with tangible memories. I wish we had videotaped the ultrasound. (I had no idea we had that option.) I wish I had kept a journal. I wish I had kept the positive pregnancy test stick. We are still saddened by the whole experience. That will never change, but when we reflect, the pain is different. It’s less primal. We’ve moved on and are trying to conceive a baby again. We remain hopeful that we will be holding our first healthy baby before the end of next year.


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