The following is a story that I have been working on for several years. It took place 15 years ago. I am finally ready to share it with the universe, and would appreciate any feedback you would be willing to share. Thank you so much!
I carry a one-in-four risk of conceiving a baby with a fatal disease. I was already blessed with two healthy children. Most people would leave well enough alone. Why was it so important for me to take this huge risk and possibly pass on my genetically mutated genes to an unborn child? Was I selfish or brave, or just plain crazy?
To understand my answer to those questions, we need to go back eight years, to the birth of my firstborn son, Avi. My delicious, adorable, sweet son was born with a devastating genetic disease, Fanconi Anemia, resulting in many severe birth defects. From deformed kidneys and intestines to missing thumbs, Avi’s tiny body needed many surgeries. With a wisdom and fortitude way beyond his infant and toddler years, he bravely endured seventeen surgeries his first two years of life. Suddenly, just as he was thriving, a few weeks shy of his fifth birthday, Avi developed a brain tumor. Within one week, he was dead.
Grief and Healing
The pain and grief of losing a child is indescribable. For the first few months, I would cry when I heard one of his beloved songs or ate one of his favorite foods. There were Avi reminders everywhere. His adorable laugh played over and over in my head. What kept me going was my strong sense of connection to my other two children; Rebecca was three and baby Max was only nine weeks old. They depended on me for their daily care. I pushed myself to smile through my pain and be an attentive mom for my kids. Nurturing and nursing an infant was a great catharsis; I was saying goodbye to my first son and bringing life to my second. I couldn’t have planned for a better way to heal.
Next Steps
Three years passed in the blink of an eye, and I soon found myself aching for another child. So, why not leave well enough alone? Why tempt fate? Call it mother’s instinct, but I felt that having another child would create a more balanced family, with less micromanagement of each child and more focus on the family as a unit. I came from a family of four children, and that felt balanced to me. No one gets to be too lonely, no one gets to be without an ally. Everyone gets the opportunity to look out for another and develop good family values.
I love children, the awe of rediscovering the world through their fresh eyes. A child at heart, I am always pulled to the authenticity of children, the naked honesty that they bring to their experience of the world.
Testing and Waiting
But the decision to grow my family was not simple. Not only was I at risk for FA, I was also thirty-eight years old and at risk for many other chromosomal abnormalities, such as Downs Syndrome. Wasn’t I pushing my luck to attempt to conceive three healthy babies in a row? But if I hadn’t risked before, I wouldn’t have been blessed with Max and Rebecca. So, I took my chances, and when I conceived, I readied myself for the earliest prenatal test available. At ten weeks gestation, I went for the CVS, or chorionic villus sampling test. Thus began an excruciating waiting game.
I am awful at waiting, especially for test results. It usually takes about ten days for fetal cells to be diagnosed for FA. I became alarmed when two seemingly endless weeks had passed and I hadn’t yet heard back from the geneticist. When I couldn’t take it any more, I broke down and called her, and found out that the fetal cells were growing poorly and were therefore difficult to read. In her dry researcher’s voice, she informed me that the test results were inconclusive. Two vials were in the “normal” range, and one in the FA range! I felt sick as I tried to focus on the next step. By now, I was thirteen weeks pregnant, and thoughts were swimming in my head of another sick baby with FA who would most likely die at a young age. Could I bring another child into the world who would suffer like Avi? Could I go through the pain of loss again? What toll would this take on my husband, my two children, my marriage?
Agonizing Decisions
I was overwhelmed with confusing thoughts and difficult decisions I had to make very soon about this pregnancy. Do I terminate now and save my child from suffering? Do I wait four more weeks and perform a more conclusive test? If I terminate at nearly twenty weeks gestation, I will be halfway through my pregnancy with a viable life that I will feel moving inside me. How could I possibly terminate a pregnancy this far along? There had only been five similar cases in the history of FA prenatal testing. Of those five cases, two were healthy and three had FA. The odds were against me and I was devastated.
At fourteen weeks gestation, I had become totally overwrought with ruminating thoughts of my unborn child. I couldn’t concentrate on anything else. I had no appetite and great difficulty sleeping. The anxiety of the unknown fate of my child permeated my very being. I began taking daily walks with a friend who had also lost a young child in the recent past. Aside from my husband, Marc, she was the only person who really understood my pain. I obsessed with her about the unknown fate of my pregnancy. My heart was becoming more and more attached to the baby growing inside me, while my head was logically telling me to disengage. I hated who I had become, a stuck and anxious person, nothing like the calm and levelheaded woman I usually am. I wanted to take action, but wasn’t sure what to do.
A Choice is Made
The advice of most of my physicians, family and friends, was to terminate this pregnancy now in order to avoid a partial-birth abortion four weeks later, when I could have a new test to definitively rule out FA. I called my obstetrician and made plans to terminate on the following Monday. As overcome as I was with fear and tension about the abortion, I was also convinced that if my baby were indeed sick with FA, the fair thing to do would be to terminate now.
I was still filled with so much conflict. As an orthodox Jew, abortion is not something I take lightly. It is generally frowned upon except in extreme cases, and particularly to save the life of the mother. Since my life was not at risk, I did not go to my Rabbi for advice. I was brought up to believe that if you ask a Rabbi for an opinion, you must follow it. I was afraid of what he might advise me, so instead, I asked him for his blessing. He made special prayers for my health and for the health of my unborn child.
Another source of my conflict was that I had already given birth to a child with FA; a sweet, adorable, funny, loving child with a gift for bringing joy to so many. I felt blessed that I got to have Avi in my life, even for a short five years. At the same time, I thought of all the pain that he suffered through multiple surgeries and the agony of a brain tumor. How could I knowingly bring another child into this world who might suffer in this way?
Still struggling with our decision to terminate, my intuition was pulling at me to schedule an ultrasound the Friday before the abortion was to take place. I thought I might be able to confirm the diagnosis of FA by seeing that the fetus was growing poorly, the head size was smaller than normal, or that there were some limb deformities. Then I could make a more informed decision.
A Sign From Heaven
The ultrasound lasted about an hour. The fetus was actually larger than normal, a great sign, and the head was rounded and reminded me of Rebecca’s beautiful round forehead, not flat like Avi’s. Seeing these signs and the little fists and tiny kicking feet, my fetus was no longer three vials of poorly growing cells. She suddenly became a real baby. I could not, in good conscience, abort a fetus without confirmed test results.
On the way home from the ultrasound, the sun broke through a cloudy rainy sky, and Marc and I saw that as a final sign of hope, and we knew that we could not decide to abort until we knew for sure whether this baby was indeed affected by FA. However agonizing the wait for the final results of testing might be, we were going to wait it out. Another thing we had totally overlooked was that the abortion had been scheduled on the anniversary of Avi’s death! How unfathomable to lose two children on the same day!
The decision to wait it out felt liberating. For the first time, I allowed myself to hope that there really might be a chance that the baby would be healthy. Until then, the fear of loss overrode my ability to hope for the best. I now embraced the pregnancy, knowing that whatever the outcome, I could powerfully choose to enjoy the time I was pregnant and feel the miracle of life growing within.
Testing Again
Finally, the day of the test arrived. The procedure involved removing blood from the umbilical chord, a complicated process, as the baby was constantly moving and getting in the way of the needle used to extract the blood. This blood contained the genetic material that would give us a definitive answer as to the health of my baby. Now, I had to wait again. In just four days, the following Monday, I would know how to plan for the future of this baby…of our family.
Monday morning, after a fitful sleep, I awoke with a jolt, filled with fear and anxiety about the phone call that I would soon receive. I needed to get out for a walk to calm my nerves. As Marc and I walked around the neighborhood on that sunny spring morning, I was preparing myself for any outcome; if the fetus had FA, I was prepared to abort, no matter how emotionally painful that would be. If she were healthy, I would be forever grateful!
The Phone Call That Changed My Life
The phone rang as we returned from our walk. It was the geneticist, an hour early. She had looked at the first twenty cells and they were all normal. NO Fanconi Anemia! Needless to say, I felt elated, relieved! It was as if a release valve opened, and all the love and hope that I had been keeping in check came whooshing in. Tears came now, of happiness, relief, and gratitude for the health of my unborn child.
I finally gave myself permission to go out and buy my first maternity clothes. I could now plan my future: a future with a new baby girl, my miracle child, who was almost not to be. I am forever grateful for my intuition, the gut feeling that I had to wait longer and delay the abortion. I have relied on that intuition for all the important decisions in my life, and it has helped guide me through. I am forever grateful for my miracle girl.
