Speaking for Two: A sister's medical journey navigating for her nonverbal twin

Julia Kramer-Golinkoff Juliakg1@gmail.com
Annie Kramer-Golinkoff anniekg1@gmail.com

Abstract

My twin sister Annie is more than my best friend. She is my other half.

Part of why we are so close is because we are perfect compliments. While I am a quiet doer, she is a loud delegator. I like being on the periphery while Annie loves the spotlight.

We know each other so well that we do not need words to communicate. With a glance of her eyes, she tells me that she wants to go ice skating, not to the movies.

What distinguishes our bond is that it exists despite the fact that Annie cannot walk, talk or even scratch her nose. Annie has multiple complex medical conditions, including VATER Syndrome, Tetralogy of Fallot, kidney disease, and has had countless major surgeries.

In December, our relationship took on a new dimension when Annie experienced a life-threatening medical crisis. As I sprinted into the emergency department clenching my limp, unresponsive sister in my arms, I looked at Annie and said, ‘I have you. Ok? We’re gonna figure this out. You keep fighting. And so will I’.

In that moment, I became not only her sister, but the translator of a rich, nuanced person stuck in a seemingly incapable body. This was not only Annie’s fight; it was mine too.

Annie’s job was to keep breathing, to wake up, and to keep fighting. Mine was to be her loud, unwavering voice and advocate.

During our two-week ICU stay, Annie’s life was saved because we had a care team that listened. They treated Annie with humanity, and they did not rely on assumptions. They asked questions. They knew their expertise was medicine while my family’s was Annie. By harnessing our expertise, together we unlocked the mystery plaguing my sister and saved and restored her life.

While they monitored Annie’s vitals, I told them how communicative and connected she was at baseline. I shared how she could track and understand conversations without missing a beat, how sudden noises like slamming a door would startle her. I explained how her arms clench and her jaw rests ajar. Annie’s doctors used these insights to help her recovery.

But we were lucky. Our health care system often falls short for patients like Annie who cannot tell their story or advocate for their own needs. It is not that clinicians do not care; it is that patients like Annie are not as they appear and it is hard to convince a clinical team of her capabilities without seeming biased by love.

For people like Annie, standard checklists and questions do not suffice. We need health care providers to leverage families and surrogates to understand patient's’ unique capabilities, especially when they do not fit a standard mold.

In our talk, we will use this experience to demonstrate the importance of holding health care to the same quality and compassion standards for patients with special needs’ including nonverbal ones like Annie. After all, a patient's ability to speak, or his or her twinness for that matter, should not determine the outcome after a medical crisis or the dignity or quality of care along the way.
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