Grieving Silently

Mar 3, 2015 | Agenesis of the Corpus Callosum, Induction/L&D, Stories

Suddenly something we had taken for granted looked impossible.

By A Grieving Mother

I knew that I was pregnant with my second child very soon after conception. This enabled me to follow all the recommended health guidelines such as taking extra folic acid and no alcohol.I was over the morning sickness by week five and celebrating a great pregnancy with family and friends. We excitedly chose our baby’s nickname from four weeks and used it daily. By week eighteen, we had chosen a boys name.

Because of my advancing age we took up the offer of first trimester nuchal translucency screening. During this process I briefly contemplated what an abnormal result might mean. I relaxed on hearing the normal results and then counted down the weeks until I could discover whether I was buying blue or pink.

I was so excited the night before the 19 week ultrasound that I didn’t get much sleep. On waking though I told my husband that I had seen my own grief stricken face in a single dream image. Although I didn’t attribute it to anything at the time, looking back, it was both a warning and an anchor.

It was at the end of the seemingly normal ultrasound that the senior sonographer and obstetrician appeared. We were ushered into a counseling room as I struggled to comprehend them telling me that my son had a major brain malformation, agenesis of the corpus callosum. I clung to phrases such as many somehow live a fairly normal life while reeling at terms like developmental delays, possible physical problems and significant intellectual disability.

We were told there was no way of knowing where the dice fell for our child. We were booked in for an MRI to confirm the results the following week and told to try not to panic before then.

During the week-long wait I read everything I could about our baby’s condition and likely prognosis. I tried to think of best case scenarios as well as worst case scenarios. This time, my husband, always the positive one, met with me on the worst case scenario journey.

We asked ourselves what we could realistically offer a child with special needs. Our discussions fell in two areas, the best interests of our son, and the best interests of us as a family.

Like all parents, we wanted our son to be happy, to be valued and loved by others, and to be able to participate in life and the community. Suddenly something we had taken for granted looked impossible. Both of us had worked in the disability field, and had seen the isolation and treatment of people with special needs and of their families. Would our lives become an endless struggle for access to services, and what would happen to our son as we aged?

Considering my own chronic health conditions, along with my age, my physical ability to care for someone with significant disability was limited. Neither our own aging parents nor other family lived nearby to offer support. Moving nearer to them would mean forgoing access to the services we and our child would need. We wondered how we could raise one child in the mainstream simultaneously with another in the world of special needs. We discussed issues of employment, income, housing, health, therapy, schooling, sibling issues, marriage and family life until we were numb.

During the next week people commented on my very obviously pregnant belly and my “pregnancy glow.” I wanted to scream that I was in a private hell, that I feared this child growing within me for his potential to ruin dreams for my other child and my marriage. I tried to stop rubbing my belly. I tried to ignore his kicks. But it was much too late not to love this child; I loved him just as much as the one I had already brought into the world. On a practical level however, I knew we didn’t have the capacity to live this out. I felt helpless and like a total failure because of it.

The MRI confirmed the ultrasound and worse. Suddenly I stopped hoping. I knew from my grief stricken dream face that he was not going to be lucky. There would be no magazine story telling of the triumph of the human spirit against all odds or of tough beginnings overcome. Our son’s life would be full of difficulties, pain and restrictions. Life would become a struggle for all of us.

Two days later I heard myself saying to the obstetrician that I did not want to continue the pregnancy. It seemed surreal.

At 20 weeks I had an induced labor termination of pregnancy. They called it a “medical termination for genetic anomaly.” I labored through the darkest night of my life and our son was stillborn. The hospital staff was completely professional, reassuring and compassionate. At all times we were treated as a couple who were losing and saying goodbye to a much loved child. Our son’s remains were handled with respect and dignity. We were grateful that we got to hold our son and to say goodbye. He was cremated, and we will hold his ashes for as long as it takes to let go.

We felt unable to tell people that we had chosen to end our wanted pregnancy. While the secrecy hurts and compounds a silent grief, we felt we were dealing with enough heartbreak without having to hear people’s judgments about us, or about people with disabilities, or about abortion. We were grateful to have a choice about our family’s future, but its still not a choice any parent wants to make.

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