It began in the very beginning. I had to decide whether or not to have an amniocentesis after losing our first child to an unusual genetic disorder. During the 16th week of both of my subsequent pregnancies, in 1989 and 1991 respectively, I chose to undergo a procedure that included the penetration of a terrifyingly long needle into my abdomen in search of vital amniotic fluid that would then be tested to see if this baby, like the first, had Turner’s Syndrome. I was classified as high risk and so the doctor insisted on this test as a diagnostic tool. Not that it mattered. We decided well before the procedure that even if the results revealed that this child too had T.S., we would see this pregnancy through to term, God willing.After this probing, almost alien-like, procedure we were referred to a genetic counselor (another consequence of our previous pregnancy’s outcome). Pam sat facing us and extended her right hand to me and her left to my husband. “I’m your bridge,” she said. “We have a lot to talk about, but first things first.”
I sat on the edge of the hard plastic break room chair almost to tipping and breathed a sign of relief. Finally, someone who could understand the agony Chip and I had already been through. Someone we didn’t have to explain and explain again the depth of our pain and confusion at the loss of our first child, our daughter Emily. We had someone who would stand up for our choice even against doctors who proposed something else. We didn’t have that before. We were alone. The pressure we felt from well meaning doctors made us feel weighed down and rain soaked by their expert opinions. This time, if there were a problem, we had someone to stand firm with us on our values and desires.
Pam had seen it all and worked with countless other parents who struggled with genetic uncertainties. She could speak the language of the medical community and translate when necessary. Chip squeezed my other hand and smiled at me with his own sense of relief. We were going to be okay.
“Before I can advocate for you as parents, I need to make sure I understand your wishes,” Pam began. “This time, if the fetus presents with the same chromosomal defect, would you prefer to terminate instead of waiting for the inevitable death in utero? There’s no reason to put yourself through that pain again.”
There it was. The choice. A choice about our yet unborn child. Any relief I had dissipated like cheap air freshener. She was really one of them. Pam said that she was there to advocate for our wishes, but she’d made assumptions about what those wishes were. Termination was not a choice in our minds, and so it seemed that we were alone yet again to stand up for our child.
Thus begins my new book entitled Standing Up for Your Child (without stepping on toes) to be published by Focus on the Family/Tyndale Publishers in July 2007. For more information on how to stand up for your child, visit my blog dedicated to that purpose.