Saying Goodbye Twice

Diagnosis: Trisomy 18

By Benjamin’s Mother

My first T-18

In March 2007, I was a happy 3-month pregnant 39 year old. It was my 6th child and I had 5 beautiful healthy children. My first child yielded a false positive AFP, and I never accepted prenatal testing since then. Besides, I told myself I would NEVER terminate a pregnancy.

One night after sex, I turned on the light and the sheets had blood all over. I panicked and called the doctor. I was told this is normal and not uncommon, don't worry and that it was very easy to break vaginal veins, she said she was sure the bleeding would stop. It did, but my fear did not, I just knew something was wrong - it was not normal for me.

A week later, I went in and she did an ultrasound. There was a heartbeat, but a huge blood clot in my placenta. I was bleeding in the placenta. She told me to take the neucal blood test and I told her that I didn't want to take any screening tests. She made an appointment with the Perinatologist and sent me over immediately and gave me all the paperwork for the blood test.

I looked at the paper unsure, went to the Perinatologist and took the blood test that day. The Perinatologist did another ultrasound and said the baby looked good and that my placenta would most likely heal. I was put on pelvic rest and told not to worry.

The next day I went into labor at 14 weeks. The baby was alive through the labor. I couldn't stop the labor and lost the baby in the ER and then had a D&C. I was devastated and couldn't stop crying. I blamed myself and thought of every time I lifted, exercised etc. Each day seemed to get worse, not better. I couldn't figure out what went wrong or if the pain would ever ease.

10 days later the Perinatologist called with the results of my blood test. I thought how insensitive for him to call and not even know I lost the baby. I tried to talk to him, but just bawled that it didn't matter because I lost the baby the very next day after the test. He told me that the baby had 1:4 chance of Trisomy 18. He felt very strongly that the placenta supported this and that my body reacted to a baby that was not compatible with life.

For the first time I felt comfort and was so glad I had taken the test. I studied up on Trisomy 18, and he assured me that I would be at no higher risk for a subsequent T-18 in future pregnancy.

My 2nd T-18

In December we found out we were expecting again; I was elated. In February, our family went to Hawaii on vacation. One night, after sex there was blood. My husband and I looked at each other and talked about how we shouldn't worry because it's normal.

We both knew. I silently cried myself to sleep. When we got home, I went in for an ultrasound; I was 16 weeks pregnant. The technician immediately saw the heartbeat and then became quiet. I asked excitedly if she could tell the sex. She was abrupt and said she needed to concentrate. I turned my head and cried, I knew.

She had found an omphalocele and explained that if isolated, it could be surgically fixed. She and the doctor kept saying how sorry they were, I knew there was more. We did an amnio right there. I said I would never terminate, but I just wanted to know so I could be prepared.

A week later I went to the perinatologist. They confirmed the omphalocele, saw a cleft palate, only one artery (not two) to the placenta, choroid plexus cists in the brain, water behind the head, and the heart was on the wrong side. The next day the amnio results came back - a full T-18 and a boy. I was 17 weeks pregnant.

I had to make a decision. I had three choices: 1. Terminate the pregnancy with a D&E (safest for me and quickest, no pain); 2. Induce Labor (most likely placenta would stick to uterus and I would need a D&C - painful long labor, potential complications); 3. Go to term (risky for me with my bleeding - baby most likely not to survive to term.)

My husband felt very strongly about the D&E. I was a mess. After a week of heart wrenching discussions, consulting my dad (also an OB) and others we respected, endless internet research, we scheduled a D&E.

As the days approached for my procedure, I became more and more emotional. I had a hard time explaining to friends and to the kids what I was doing or any details of the procedure. I was vague and the kids still had questions. The day before my D&E, I woke up crying and couldn't stop. I walked outside; the San Diego warm sun was healing on my face. I walked through our fruit orchard and sat by an orange tree for an hour. I picked some sweet oranges and ate them and cried and cried, throwing the peels in front of me.

It would all be over tomorrow. My body was shaking and I felt nauseated. I felt a warm bath of God's love through my body and I felt like he understood my pain and that I could be strong and go through with the procedure. As I walked back to the house, I began to realize that I wanted to validate this baby's life. I wanted to see it. I wanted to touch it. I loved labor and wanted to go through it again. I couldn't now and it hurt.

I went to the doctors at 4:00 so she could dilate my cervix. I freaked out in the office and sobbed. She said she would give me time to think about it. I called my husband and relied on his firm decision. I opened the door and told the doctor she could start. I sobbed as all the sticks were put in me. I cried all the way home and realized clearly that I wish I would have induced, but now it was too late.

My husband came home, saw the mess I was in and said he would support me if I wanted to change my mind. I told him it was too late. He said, "Call the doctor." I called the doctor on call at midnight and sobbed, "I can't do it - I want an induction." He didn't even know me. He canceled my D&E and set up an induction for the next morning. I went in to brush my teeth - I was whistling! A huge weight had been lifted and now I was listening to my heart.

My Experience

I just got back home from the hospital a few hours ago and yesterday was a beautiful experience. The staff was amazing! The nurses were caring and sensitive and my husband was by my side. For me, it was the right decision. I was home. I loved this setting - it had always been so happy and familiar after five births. They gave me the vaginal pills and after 6 hours, I started labor and gave birth shortly after.

My son jerked his leg and arm and then was still. I was so fascinated to see my baby boy. I held him and played with his perfect feet and hands. I was smiling and so happy (I thought I would be sobbing.) His legs moved so well and we took pictures with his little hand on my finger. His entire liver was on the outside and I could see his cleft palate. I knew I had made the right decision to end his suffering and prevent further maternal risks.

There was no question after seeing him that he was not viable. I kept him with me and he stayed in the little bassinet next to my bed as I slept that night. I said goodbye in the morning and they took him to pathology. We named him Benjamin.

I was so grateful for our time together. I didn't even want the epidural because I was enjoying the labor pains so much. It was the only thing I would experience with Benjamin and I didn't want to be robbed for a moment. The pain and labor for me helped me validate his existence and my motherhood. I felt I had somehow earned it. It sounds so crazy, but it was what I needed.

After being an incoherent crying mass for the past 3 weeks, I was happy and didn't even cry yesterday. I was at peace and felt love. I know there will be rough days ahead, but I will look back on yesterday and remember my feelings and I know that will bring me comfort. I felt closure and peace.

The biggest thing I learned is how important it is to follow your heart. We all have different life experiences, which make different choices appropriate for each individual. There is no "right" way or choice, just the right one for you. Never say "never" unless it is to never judge another's decision. I learned that it can be a beautiful, meaningful experience and Benjamin's short little life will change mine forever. For that I am truly thankful.


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