Saturday, October 18, 2008

Prologue to Kaden – Part 2 – Diagnosis of Cleft Lip and Palate

Our story continues at the 20 week sonogram. I’ve attached a sonogram picture from then so you can see things the way we did at the time . . .

We went to see our obstetrician and have the 20 week sonogram in January 2008. For anyone who has not had a 20 week sonogram, it’s the big one, the one where the doctor basically does a survey of the baby’s body and organs to determine if things are “normal” or if there are “anomalies”. I use the words “normal” and “anomalies” intentionally; they soon became obnoxious and intolerable to me. The first time around the sonogram technician was smiley and lighthearted, telling us things looked great and that we were having a boy. She called in the doctor to review and he informed us that all looked fine but we needed to come back the following week because he couldn’t quite make out details of the baby’s face due to the fact that his tiny little fists were balled up in front of his face. My husband picked up on a hint of hesitation and a look of concern in the doctor’s face and asked if he saw a cleft. The doctor said that he couldn’t say one way or another if there was a cleft because he just couldn’t see the baby’s face. I remember remarking that it wouldn’t be the worst thing in the world if the baby had a cleft, that was fixable, and the doctor agreed.

We left the office feeling happy and relieved that all seemed to be well with our little one. Secure in the knowledge that we were having a boy we agreed on a name, Kaden, in honor of my husband’s father (also a “K” name) who passed away when my husband was a small child. We mooned over the sonogram picture --- “Kaden has daddy’s legs” I remember saying. We were already completely in love with our little one and making plans for a great future together.

I knew something was wrong immediately at the next sonogram appointment. The technician was somber, quiet, she kept looking at the baby’s head – but not at his face – she kept reviewing and measuring his brain and his heart. I asked if she saw anything unusual and she didn’t answer. I said “I know you need the doctor but . . .” She cut me off with “I can’t say anything. I have to get the doctor.” She walked quickly out of the room. My husband and I exchanged a few nervous glances. He squeezed my hand.

The doctor entered the room and, without a single word to us, began looking at the same things the technician had: the head and the heart. After what felt like an eternity he told us that our baby would have a bilateral cleft lip and palate. I felt relieved to hear that was the only problem he saw but perplexed at all the measuring I saw of the heart and the brain. The doctor told us that in most cases a cleft lip and palate are isolated anomalies and the babies are otherwise healthy and fine. However, he then told us that in about 20 percent of cases cleft lip and palate are indicative of more global genetic or chromosomal anomalies, some of which are “not compatible with meaningful human life” and suggested that we have an amnio and speak with a geneticist to determine if we should move forward with the pregnancy.

Sucker punch. That’s the only way I can describe the way I felt. I didn’t know much about cleft lip or cleft palate but that wasn’t really what I was worried about. Not compatible with meaningful human life? Really? Had that phrase just been used in any sentence about my baby? Amnio? Geneticist? Oh God . . .

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