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What Disorder?

Contracted joints. Small chin. Undersized head. Poor blood movement through the umbilical cord. Minimal fetal movement. Rocker-bottom feet. Low-set ears. All words we hear when Dr. Bates makes her quiet, yet dominating, entrance. Her statements make my head spin. How many things can possibly go wrong with one tiny baby?

The younger, African-American doctor speaks in a soft, comforting voice. It does not protect us. We remain so quiet, the smack in the face we were just dealt echoes.

“While I don’t know exactly what condition your baby has, what I do know is that when I see this many abnormalities at once, it’s most likely an indicator of a lethal condition.”

Punch in the gut.

I hear one word only: lethal. Until this point, I never considered the mortality of the situation. My breath escapes me. The nightmare, impossibly, hits a new low. I am dazed, tearful, in shock. How can this be? Yesterday, this issue was labeled as “something like Down’s Syndrome”, and I was devastated. Now, I wish it was only Down’s Syndrome. The jump from a baby with disabilities to death knocks the wind out of me. Jason, feeling the same shock I do, grabs my hand. Feeling the warmth of his hand against the chill of mine is the only lifeline I have right now.

“I know this is a lot of information to process right now. I know it’s confusing and scary. I wish I could tell you definitely what kind of disorder she has, but without further testing, we cannot be certain. If I were to guess, based on her presentation, it would look like Trisomy 13 or Trisomy 18.”

Now she has lost me. I cannot process what she says. Her doctor talk is a new language. I feel the anger swelling in my heart. My stomach is queasy as I think about our baby having something I don’t even understand. Down’s Syndrome I could grasp, but this is inconceivable. Dr. Bates senses our confusion, our panic. As her eyes try to conceal sadness, she explains, “Trisomy 13 and 18 are chromosomal disorders, either adding an extra chromosome 13 or 18. Doing an amniocentesis is the way we can tell for sure if it is either of those two conditions. We would use a needle to get some amniotic fluid, which we could test for chromosome abnormalities. We can do that today, right here, if you want to go ahead with it. I’ll step out for a minute.”

I can barely contain my tears as we are now unattended. Grabbing several tissues, yet not nearly enough, the sobs are uncontrollable. Rushing from his chair onto the exam table with me, also sobbing, Jason hugs me as if he will never let go. Our tears speak volumes. Jason’s face is anguished, pained. His face damp with tears, his eyes pleading for something different. My sobs intensify. It’s a struggle to get my choked-up voice under control long enough to speak, knowing that our time is short before someone returns. We have decisions to make.

“What do you think about doing the amniocentesis?”

“I think we should do what you’re comfortable doing, Babe.”

My body shivers. I feel like an outsider watching two other people. My head floats to the ceiling. This isn’t me anymore.  Fighting the disconnect, I try to compose myself, bring myself to reality. The terror of this test wards off any more tears. This wasn’t on my radar. This was suppose to be only the ultrasound. Now I’m face-to-face with a huge needle in my gut. Hasn’t my gut suffered enough?

“I really don’t want to do that test. Honestly, it scares me to death.” I hesitate. I take a deep breath. My fingers rub together, making circular motions. I re-focus on the sensation, feeling the soft, tickle-like motions on my palms. I am a hair closer to rational.

As a patient, I know what I don’t want to do. As a mother, I know what I should do.“I feel like to find out what’s going on, this is our only option.”

“You’re probably right. I just want you to be OK with it. But there really is no other way to get the answers we need right now. You know I’ll be right here with you.”

 

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