Making Decisions After a Prenatal Diagnosis

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If you have received a Trisomy 18 Diagnosis for your child, you are now being faced with many decisions. We hope to provide you with the information you need at each step of the way to help you make the best decisions for your child and your family.

Please read more from the Trisomy 18 Foundation about the decisions you face after the prenatal diagnosis.

Judith's Story

Late-term pregnancy termination is a profoundly isolating experience. There is no hustle and bustle of nurses, and technicians, and (occasionally) the doctor. No anxiously hovering husband or partner, who doesn't really know what to do despite the many hours of Lamaze classes.

You are left alone and instructed to buzz the nurse when you are ready to push.

I remember the sense of isolation when my first son, Jacob, was born. But it was something different, more of a necessary withdrawal from the external activity and attentiveness of those around me. With Jacob, I withdrew into myself, into a state of deep concentration in order to maintain life and to give life, in order to release the child from the absolute safety of the womb to the uncertainty of life. It was the beginning of our separation.

Pregnancy termination--abortion--involves a much different kind of separation.

There are various methods of late-term pregnancy termination. I don't know precisely the method that was used in my case. I just call it "death-in-utero." The procedure started in a surgical room where doctors inserted straw-like tubes into my pregnant stomach to empty the womb of amniotic fluid and replace it with a substance that would kill the fetus. Contractions and stillbirth followed hours later.The image in my mind, one that will never leave me, is of the baby knocking against the tubes...

The image in my mind, one that will never leave me, is of the baby knocking against the tubes as if he was swatting at a strange object. I saw the tubes move and pictured a tiny hand that I could have touched but for the thin layer of skin and tissue separating us. Was he trying to protect himself?

My son, Ira, was diagnosed with a genetic disorder called Trisomy 18. It is a relatively common syndrome affecting approximately one out of 3,000 live births and is much more common among girls than boys. The syndrome is caused by the presence of extra material from chromosome 18. Fifty percent of infants with this condition do not live beyond the first week of life. Some children survive to teenage years, but with serious medical and developmental problems.

This is all I know--the textbook version.

I did not have an amniocentesis in my first trimester. In hindsight, it seems a bit irresponsible at my age (42 years old at the time). I suppose I believed that we (Ira and me) were immune from statistical probabilities.

Doctors discovered the condition during an ultrasound that revealed extensive cystic growth in the baby's brain. An amniocentesis was rushed. I never will forget the doctor's voice when he phoned. He was so deeply and genuinely saddened by the news. I remember his kindness and empathy along with all the rest.

My husband and I had to make a decision quickly. I was nearly 23 weeks pregnant and soon would not be able, legally, to abort the child. Our marriage was rocky. The doctor said the fetus was not viable. It seemed the only choice.

After the transfer of fluids, I was wheeled into a hospital room on a floor where other women were undergoing the same procedure that night. Nothing happened for several hours, so I told my husband that he might as well get some sleep in the next bed. I watched a movie on TV until the pain started.

When the pain seemed too much, we called the nurse. While she was in the room, I felt I had to push. When I did, I screamed out, but it was only my toxic water breaking. The nurse told me to keep my voice down. I was not even allowed the birthing scream of motherhood.

I don't recall how much time passed before I delivered Ira. The nurse wrapped him in a small white hospital blanket and took him away, with promises to bring him back. That is what we wanted.

My husband cried, big tears washing his face. I did not cry. I felt calm and in control. The baby was tiny, but complete in every way. All his fingers. All his toes. His eyes seemed pasted shut and his body was somewhat tacky. But he was beautifully whole with no apparent deformities.

We left the hospital that morning, while Ira was taken for cremation. We belonged to a Reform synagogue at the time. Although, in Judaism, life does not begin until birth (live birth), our Rabbi willingly conducted a brief service and recited prayers as we placed Ira's ashes in a tiny vessel at the cemetery and recorded his birth and death date: May 27, 1992.

I felt calm, though tired, in the following few days, until one day taking Jacob to preschool. He pulled me into the room with excitement as we arrived, wanting me to see something. I followed him to a small incubator with little yellow chicks just breaking out of their shells.

I shattered and ran out of the room. That was the beginning of a long period of grief, and anger, and self blame, and suicidal thinking. I hated women and families with their big SUVs full of children.

As part of medical treatment and therapy for depression, I came to terms with the loss. It was not until a number of years later that I became aware of how much I wanted a relationship with my second child. I planted a garden for him. I visited him at the cemetery. We talked. I talked. He showed me his life one day when I was at the cemetery--a transformation from an infant to a toddler to a young child to an adolescent to a grown man. It wasn't a hallucination. Yet, I could see it and feel it and find joy in it.

Ira is with me still, and we frequently share what I call an "almost touch."

My son, Jacob, knows nothing of this, nor does most of my family. I want to say that I have two boys that I love equally. It is a mother's prerogative to love unconditionally in life as well as death.