Tuesday, May 12, 2015

A Heartbreaking Choice Born of Love

There are universally accepted moments which are deemed “significant” in a woman’s life.  One is usually her wedding day, when her father tearfully walks her to the edge of her new beginning and her husband-to-be meets her to complete the journey.  Another is the birth of a child—the pain that is accepted as a means to an end and then, by some miracle of Mother Nature, increasingly forgotten so that the cycle can be repeated.  For me the memories of both of those moments will remain forever imprinted.    There was additionally, however, in my life a third moment—a moment of profound significance; of monumental pain and self-awareness; of mourning and loss.  It was a two week period of time in my life that completely changed the woman I am and made me reassess the woman I had been.  A time when the concept of “quality of life” burned so brightly I had to squeeze my eyes shut to avoid the glare.  Even now the beginning is crystal clear, while the ending is still so painful I can almost reach out and touch its presence.

My husband and I had two children—one whom I had given birth to a year before the two of us met; the other the result of our consummated marriage.  When I discovered I was pregnant with our third, we were overjoyed.  We had been down the road before.  We had a beautiful family.  We had paved the way for a future of marital bliss.  Six weeks into the pregnancy, however, as I touched my already swelling belly and crooned lullabies softly to myself, I knew something wasn’t quite the same as it had been during my previous pregnancies.  My growing uterus cramped horribly and pain gripped me 24 hours a day, 7 days a week.  My doctors all attributed it to the scarring that was the result of two previous caesarians, and I blindly accepted their explanations.  At week eighteen, I raced to the ultra sound department for my first close up look at our still tiny bundle of joy.

It didn’t take long to realize that things were not as they should be.  The technician was coy and evasive, and when she turned the monitor away from me instead of towards me, my heart sank into the very pit of my stomach.  When she excused herself for a moment and told me the doctor would be in in a few minutes, I was convinced my baby had died while nestled in my womb.  In retrospect that scenario, while grim and heartbreaking,  would have been so much simpler.  When the doctor arrived, he slowly and deliberately returned the scanning wand to my now shivering body and gazed inside of me through a monitor of black and white pixels.  When he was finished, he leaned back on his stool and delivered the news that the child I was carrying showed signs of malformations.  His limbs were shorter, far shorter, than they should have been at that time.  I immediately protested and pointed out that my father had been quite stout.  The doctor merely shook his head and continued.  My baby also had what appeared to be a cystic hygroma on the base of his skull—a growth the side of a ping pong ball.  My child was showing all the classic signs of T-21—Down’s Syndrome.

My initial reaction was one of absolute denial.  My father was short.  A growth was not uncommon, right?  I had two other perfectly healthy children.  I was ONLY 35!  We scheduled amniocentesis for the next week, and I went home in a dazed state that was then wavering between denial and fear.  By the time the appointment came for the amnio, I had done enough research to educate some of the doctors.  I knew the odds were in my favor; I knew the signs could have been the result of any number of other issues; I had the number of a pediatric specialist for the cystic hygroma.  I was prepared and ready.  Except I wasn’t.
Two weeks after the amnio, I received a phone call at work.  The 21 week old fetus moving in my belly; the child whose conception we had celebrated; the baby for whom I had already purchased brand new booties definitely had T-21.  As if that wasn’t enough, the doctor added that only two chambers of the heart were seen at the time of the amniocentesis.  My baby had Down’s Syndrome.

What transpired immediately after that phone call is still a blur.  I remember the screaming that I still can’t believe was coming from me.  I remember my coworkers calling my husband.  I remember crying myself to sleep.  I also remember the all encompassing, mind numbing pain with which I awoke—and my baby continued to kick.  24 hours later, I was still an emotional wreck, but I was angry and determined.  I began my research by meeting that same day with a genetic counselor at the hospital and had made the decision to bring this child to term before that conversation ever took place.  It was, however, that very conversation that infused a healthy dose of reality into the fantasy I had concocted of a loving child with few needs beyond the superficial.  My baby would need a heart transplant at birth—if he lived that long.  The chances of his making it to term were minimal—the chances of him receiving a heart donor were worse.  His pain ( and it was a boy—I had needed to know ) would be substantial and sustained—his quality of life would be compromised to the point of round the clock care.  I had a choice, I was told.  I could end his suffering or mine.

In our modern society, we are told that the concept of abortion (and how I hate that word and all its connotations) is one of selfishness and immaturity.  We are often led to believe that the choice to terminate a pregnancy is borne solely of a woman’s need to duck her responsibility and to avoid accountability.   In reality, many times the choice to terminate is one that the most selfLESS.  I wanted to bring this baby into the world and fight his battles.  I wanted to hold him in my arms and take away his pain.  While I could have donned great armor to wage the war that lay ahead, the pain would be his alone to bear—and knowing that was more than “I” could bear.

We named him Elijah and held a private memorial, just my husband and I, after his death.  The judgmental people in my life were quite vocal, and when I returned to work some two weeks later, my mailbox was full of graphic anti-abortion material.  For years I hid from my truth and would tell strangers we “lost” the baby.  I would tell acquaintances that yes, it was difficult, but I would offer no details about our loss.  When Dr. Tillman, a courageous doctor and gentle man willing to help women in my position who required late term abortions, was viciously murdered, I realized that I needed to come out of the closet.  All of us who had made this heartbreaking choice and were hiding behind euphemisms and excuses needed to step forward and pay tribute to a man who understood our pain.   It was at that time, as I paid homage to a man whom I had never actually met, that I found the strength to tell my story while still mourning the loss of my son.   I owe it to Elijah as well to tell others that the most difficult and painful choices are the ones that leave the biggest scars—and that if we believe strongly enough that our children are in a better place, we have a responsibility to share that message.   I live with the pain I relieved my baby of every single day.

This is for you Elijah.  Mommy misses you.

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