A while ago, a friend and colleague received some devastating news. She and her husband were expecting their second daughter, and at over three months into the pregnancy they had assumed everything was fine. A routine ultrasound unexpectedly revealed multiple birth defects and a tumor, called a terratoma, attached to the base of the baby’s spine.
They were told they could choose to terminate this pregnancy, as the effects of those birth defects were not clear. Or, they could try to carry the baby to term and hope that surgery might be able to correct the problems.
As she shared her news with me, her despair carefully but not completely masked, I was brought back to the moment many years earlier, when I had received similar news. A tiny tsunami of nausea intermingled with terror and regret, flooded my body.
My first pregnancy was planned, but happened sooner than expected. Exhausted from full time work and a year of studying for a post-grad certification, my body was not in peak condition. My husband and I had fully intended to start trying for a baby once my exams were over, but the universe was impatient and so conception was precipitous.
We were overjoyed none-the-less, and I did what assume every mother-to-be did. I bought parenting books, baby-name books, maternal vitamins, I started to worry about never sleeping again, and I prepared to say goodbye to my thirty-something pre-baby body.
Despite my focused efforts to nurture this tiny creature percolating inside my weary body, I worried. Something indefinable, a small irritating something, pricked at my consciousness and created unrest.
I had been diagnosed with hypothyroidism in my twenties but frequent testing revealed that medication had it under control. Unfortunately, during the early days of this pregnancy, my TSH levels fluctuated widely. Concerned, I scoured every available source to determine if this would impact my pregnancy. I found no information confirming this fear.
Still I worried.
Six years earlier, my husband’s brother and his wife had delivered their first child. They were both in their early thirties at the time with no health concerns, and so were stunned when their beautiful little girl was born with Trisomy 21, Down’s syndrome. The family was shocked but fell immediately in love with this sweet child. One month later, my husband’s sister and her husband gave birth to their own little girl. Her appearance raised concerns. Her small, low set ears, and the epicanthal folds covering the inside corners of her eyes seemed to suggest she suffered from the same genetic condition as her cousin. Further testing revealed that although she did not have Down’s syndrome, she did have other genetic concerns.
So I worried.
A dating ultrasound at eleven weeks had shown our baby’s crown-rump length, a measurement used to determine the developmental age of a fetus, to be off. “No worries,” they assured me. “You’re dates are just off a bit.”
I told myself to heed their words, but I could not. I knew my dates were not off. Still, I pushed away my concern and tried to carry on as if all was well.
But I still worried.
With this knowledge chewing holes in my stomach, with my husband’s unusual family history, and with the persistent itch of worry that continued to keep me awake at night, I finally asked my family doctor to send me for genetic counseling. He did, but grudgingly, convinced my concern was unfounded.
My appointment with the genetic counselor would be at 20 weeks of pregnancy, and I would have a detailed ultrasound at the same appointment. Outwardly calm I was calm, but inside I was a mangled mess of misery.
My husband was unable to come to the appointment with me because of work commitments, so I drove to the hospital on my own, chanting my mantra, ‘All will be well, don’t stress about this,’ for the entire trip.
The counselor was the perfect combination of concern and reassurance. She went over our detailed family history and explained that both cousins were victims of multifactorial causes, and nothing that could be passed on genetically. And, my thyroid problems were a non-issue. There was absolutely nothing for me to worry about. “Relax,” she told me.
I worried all the way down to the ultrasound appointment.
Lying on the table, bladder filled to the point of panic, I watched the monitor and the grainy black and white pictures that filled the screen.
A beating heart, all four chambers clearly visible, and a small hand that stretched upwards were comforting signs that all was well. The baby rolled, and I could make out tiny linking segments. The spine. But, as I scrunched my eyes to make out more details, the technician spoke.
My heart stuttered. Dread, like a lead lined casket, descended and crushed.
“I’m just going to borrow the screen for a moment, dear.”
She punched the keyboard and swirled the sound head over my swollen belly. The clacking of the keys and the ‘swoosh’ of metal over gel covered skin were the only sounds in the room. I’m sure my breathing had stopped.
She spoke again, “I’ll be right back. I’m just going to get the doctor.”
As the door closed behind her, all sound disappeared. The air, heavy and thick, refused to enter my lungs. My hands flew to my stomach, to the child I had just watched roll happily in its liquid world, and I finally managed to take a gasping breath.
The term for my baby’s condition was Acrania, a neural tube defect, a failure of the bony components of the skeletal system to develop properly and fuse. A condition that was not compatible with life.
Not compatible with life. What a horribly tidy way to sum up a baby’s future. Our baby. MY baby. Safe and secure within his watery world, rolling and reaching and hanging on to life with a tiny fervor; he was doomed.
I had a choice, they told me. Ha. A choice?
I could try to carry the baby to term, but it was likely he wouldn’t survive that long. If he did and I delivered, he would not survive the birth. If they did a caesarian, he would die soon after. Or, I could terminate the pregnancy before the baby suffered even more.
Oh yes, a choice.
My family doctor, staunchly pro-life, was surprisingly supportive. He told us to feel no remorse over our decision. We were not terminating a life but instead a non-viable life form.
My husband told me he would stand by whatever decision I made. After all, the doctor had told us it was non-viable-life-form, and it was my body.
I slammed him with a look that should have ruptured his aorta. “It…is not a non-viable-life form. It…is a baby. Our baby. Then I promptly dissolved into a quivering pile of 20% terror, 20% guilt and 60% despair.
In the end, we did what they expected us to do. To terminate the pregnancy at twenty-two weeks meant that after being induced and enduring labor, I would have to deliver this child.
It took ten days to make the arrangements.
Ten long days, during which I stared at every pregnant mother I saw, wondering if she was taking proper care of her unborn child. Was she drinking coffee, or alcohol? Was she eating properly? Did she take her vitamins, and especially her folic acid supplement? (The doctor told us that taking adequate folic acid could prevent most neural tube defects.)
Ten tortuous days, in which I lost more than a little bit of my mind. I’d sit and rub my belly, singing a disturbing little ditty, “Momma’s going to kill you don’t you know,” to the tune of “Momma’s going to buy you a mocking bird.”
My poor husband didn’t know what to do. It wasn’t his fault. He didn’t understand. The baby was not real to him yet. He did not feel the connection that every woman who has carried a life within her body knows.
From the instant my pregnancy was confirmed, the baby was real to me. The physical effects of pregnancy are hard to deny: nausea, weight gain, tender and enlarged breasts, and finally the movement. Those tiny tickles of touch that at first you’re not really sure about. Then as the movement grows stronger, you know.
Sadly a man never gets to experience that.
He offered his support by never questioning any of my reactions. He just loved me.
And so we made it through the process physically intact, but emotionally scarred. I have only a hazy memory of the events of that day, perhaps from the pain medication, or perhaps because I have blocked those memories. I think it’s better I can’t remember.
I have regrets.
I regret I didn’t know about folic acid.
I regret we got pregnant before my body was ready.
I regret not holding my son. I had been too terrified of losing what was left of my mind to do so. I was a coward.
I regret being a coward.
I regret not having a funeral for him.
But, I do not regret having him. We named him Simon.
His gifts to us were his sisters. If things had worked out differently, if I had not gotten pregnant with Simon at that particular moment, if he had been born healthy at full term, then the eggs that became my two amazing daughters would not have been fertilized by the spermatozoa that gave them each the other half of their genetic material.
If Simon had not existed neither would have my two beautiful daughters.
I try to find comfort in that knowledge. My girls know they had a brother who did not survive and they know they are his gifts to us. They also know they need to take folic acid before they consider getting pregnant. I made sure of that.
My colleague decided to try to carry her baby to full term. Although the doctors had never seen a baby with two such rare birth defects, a heart defect known as atrophic left ventricle syndrome, and a terratoma, there was a chance surgical intervention could save the baby’s life.
The tumor was removed immediately following her birth. By the time she was delivered, the tumor had grown to four pounds.
Surgery to correct the underdeveloped left side of her heart took place as soon as she was stable and strong enough after the first operation, to tolerate the second.
Unfortunately, upon opening the baby’s chest, the surgeon discovered her heart was more severely malformed than he had anticipated. So much so that he had no idea of what to do for her. He improvised and she survived the surgery. The first attempt to take her off the heart lung bypass machine failed. They had to put her back on. When she was stable, they tried again. Again she failed. They told my friends they could try only one more time. If her heart failed to beat following this attempt, they could not put her back on the machine again.
Her heart failed to start. Fifteen days after they welcomed their precious daughter to the world, they had to say goodbye.
I watched them struggle to make sense of everything that happened to their tiny daughter. I saw their stress, their heartbreak, and the emotional roller coaster they were on, and I knew the pain their precious girl had to endure. I also watched them hold that tiny girl in their arms and kiss her with a powerful love.
They had fifteen days to love their sweet baby. I had none.
I was filled with sadness for their loss, but also with an intolerable regret for our own. I worried all over again that we had made the wrong decision. Then I realized that although their child had as little chance of surviving as ours did, they were given one formidable gift we weren’t.
Leslie Wibberley is physiotherapist by profession, a slightly maddened mother to two outstanding young women and one slightly insane cocker spaniel, and wife to a loving and extremely tolerant husband. Writing has always been her passion but one she has only recently re-committed her life to. With one middle grade novel complete, one young adult novel in the throngs of revision, and numerous short stories and personal essays lying in repose in her beloved MacBook Air, she is now proud to call herself a writer. Her article RAISING A CHILD WITH SPECIAL NEEDS, A DIFFERENT PERSPECTIVE recently won 6th place in Writer’s Digest annual contest.