After facing a 9-year grueling, exhausting, expensive repeating cycle of hope and devastation due to unexplained infertility, I found myself pregnant, the old-fashioned way. What an exciting surprise! My son, who was 3 at the time would finally have a much-loved sibling. My dream of a family was finally coming true.
My dream turned into my absolute worst nightmare.
After irregular blood tests revealed dramatically abnormal levels, which either meant twins, or multiples, or that the test was wrong and needed to be repeated, I was sent in for a Level II ultrasound the next day. He was diagnosed with Complete AVSD, and other congenital abnormalities and they recommended we do an Amnio to confirm a Down Syndrome diagnosis. Then they got really quiet, and suggested I do my own research, and gave me nothing else.
I blithely thought to myself, so my son will be mentally retarded? So what? We will love him and give him a great life. He will be my ‘forever’ son, as I realized he would probably stay dependent on me and my husband for the rest of our lives. I had experienced caregiving first-hand, caring for my mother with a life-long illness, doing everything for her, as her condition declined into blindness and organ shutdowns toward the end of her life. I knew I could do it.
When I called my mother-in-law to share the news, it hit me. HARD. What about the life of my firstborn? His childhood will become shared, yes, by a new baby, but moreso with multiple hospital visits and surgeries–required by the congential abnormalities. What of my marriage? Many marriages don’t make it when the realities of caring for a child with special needs has to take precedent.
When I began doing my ‘research’–I learned astonishing things about Down Syndrome. It is way more than intellectual impairment. I can be a cluster of chronic illnesses, some quite serious: Leukemia, early-onset Alzheimer’s, joint and muscle issues that can cause weakness and paralysis. Chronic constipation, requiring other surgeries, abnormalities that require feeding tubes, because trying to eat normally results in throwing up, every time.
The worst was learning about the surgeries required to fix his Complete AVSD. No one could tell us if we would be the lucky ones, and he would have ‘one-and-done’ or whether his would have complications, and he would require intubation, life-support and he would live a short-life, never coming home from the NICU. The idea of not being able to HOLD my baby, and explain that all of the pain and interventions was to help him, not torture him in continuous pain, alone in his bed, was more than I could bear. I could not consent to the life he was facing, on his behalf. The statistics of children who had died before reaching age 1 with all of his conditions made me feel as though all our effort would have been better spent in a gentle hospice-type comfort-care scenario, instead of superhero modern medicine.
I also could not consent to the life my firstborn would have, caring for a chronically-ill sibling, possibly taking over his affairs when he was just starting his adult life, trying to establish his career and family. Even if our special needs child was in a care facility, our firstborn would have responsibility. I know first hand how hard that was for me, because of my mother’s condition and my role early in life as her caregiver.
As much as it ripped out my heart to terminate my dear dear sweet baby’s life, a decision that will kill me forever, for me, it was the compassionate and ethical decision. I could not consent to going forward, on behalf of both of my sons, who would live with that decision. One, bearing the burden, of a life of chronic illness, the other, a helpless witness, who’s life will forever be intertwined.
The decision was made for me, when, after investigating an adoptive scenario, I learned how much the pregnancy itself was endangering my life. Those abnormal proteins correlated very strongly with life-threatening placental conditions that would more than likely develop as the pregnancy progressed. Leaving my son motherless, and my husband a grieving widow and single dad was not an option I was willing to entertain. I felt strongly my obligations to people already living and breathing trumped the rights of a very ill fetus.
I know intimately the continuous grief that accompanies intellectual impairments and chronic illnesses from caring for my mother. That grief ripples through families and generations. I could not continue the cycle in good conscience. And for that, I will forever be stigmatized by people, some of whom have no personal experience, who feel birth at any cost should be the law of the land.
I have lost friends, I have had people call me a murderer, and because of the blessings of on-line support groups, I have been endlessly trolled by women who made the choices to continue their pregnancies when their children received identical diagnosis. I have been horrified by the likes of Rick & Karen Santorum and the other pro-birth activists who seek to deprive women and families of these sacred, PERSONAL, family, medical, spiritual decisions. I can not imagine my horror being any worse. Every family deserves to make the best decision for their family.