In 1993, when I was thought I had been a perfect pregnancy, I made the decision along with my doctor not to have an amniocentesis. At 33, there seemed to be no need. Then one day, feeling anxious and worried about declining the test, I went to my doctor. There was no basis for my anxiety; it was just an instinct. However, to set my mind at ease, my doctor sent me to a radiologist to have an ultrasound. "Don't worry," my doctor told me, "he can see a vein out of place." I was never expecting what came next.
The radiologist spent far too long conducting what was supposed to be a routine examination of a healthy baby. He told us that he wanted to review the images and that he would call us. The next day, when we returned from Rosh Hashana services, there was a message on the answering machine. "I'd like you to come back in so that my partner can take a look at your ultrasound. Please don't worry. I don't think it's anything," he said. You can't tell a pregnant woman not to worry.
His partner, who wrote the authoritative book on ultrasound, immediately determined there was a sac of fluid in my baby's brain. He called it a Dandy Walker Syndrome. He also told us that many people are born with Dandy Walker Syndrome. On the other hand, it could be more serious, and he referred us to a perinatologist for a more expert opinion. The doctor put his hand on Richard's shoulder and told him not to lose hope and that everything could be OK. You don't console someone if nothing is wrong.
Because of our doctors' suspicions, which we were unaware of at the time, the perinatologist rearranged her schedule to see me the next day.
We went into the perinatologist's office, apprehensive about what we might discover. She prepped me for an ultrasound and within thirty seconds, the perinatologist said, "I concur with your doctor." Concur with what? At this point we had no idea.
This was when our worst fears were realized. At that moment we learned that our son's Dandy Walker Syndrome was more serious than we had known. In addition to a fluid-filled non-functional brain, he had a malformed heart with a large hole between the chambers that was preventing normal blood flow. He had also developed an extremely large cyst filled with intestinal matter, and hyperteloric eyes, another indication of severe brain damage. We later found out that these symptoms added up to Trisomy-13, a fatal chromosomal disorder.
With each new bit of information, the tears flowed harder. Richard was holding me. I thought we were the only parents in the world who had ever heard such devastating news about their child. What were we going to do? We loved this baby. We wanted this baby desperately. This was our son. We were preparing our family and our world for him. And now, we had to prepare for a tragedy. Away went the baby name books. Away went the shower invitations. Away went the first birthday party, the baseball games, the bar mitzvah. Away went our dream.
Along with the tears, the questions flowed. Could a cardiologist fix our son's heart? Could a neurosurgeon repair his brain? Could an eye surgeon help him to see? Could this baby survive? Was there anything, anything at all, that could be done? The answers were emphatically no. It was our worst nightmare and it was real. Even if my son survived the pregnancy, he had no chance of life. Every day meant pain and torture for him. As his mother I could not, in good conscience, allow my child to suffer.
By this time, a geneticist had joined us to discuss our options. We went through them all. I could carry to term. I could have a cesarean. I could induce pre-mature labor in the maternity ward. All of these posed risks for me. The doctors choose a procedure that would be the most appropriate for me, my baby, and for my future children.
The entire process took three days. No scissors were stabbed in the back of my baby's head; his brains were not sucked out and his skull was not crushed.
Ironically, the final day of the procedure was Yom Kippur, the holiest day of the Jewish year. On Yom Kippur, we are asked to mourn those who have passed and pray to God to inscribe us into the Book of Life. I prayed more than one person can pray. I was praying for all of us.
Although I never imagined I would be faced with such a difficult and painful decision, I can honestly say that for many reasons, I feel very blessed. First, I was able to find out when I did. Second, I had access to the finest medical care in the world. And third, I live in a place where my rights as an individual have not been compromised.
Though I hope and pray that no one has to go through what my husband and I have, there are people who will. It can happen to anyone - to you, your wife, your sister, your daughter, your friends. All women should have the protection, the guidance and the access that modern medicine allows.
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