The Fault in Our Anatomy

How do you decide whether your premature child should live or die? At what point in time does this foetus growing inside you have its own rights?

I was listening to a Radiolab podcast: 23 weeks 6 days. They interviewed Kelley Benham and her husband Tom French about the birth of their severely premature child, Juniper French. This couple had to choose whether they should let their daughter die with dignity at 23 weeks or let the NICU treat her, and possibly end up with a child who was severely disabled.

So as a parent, how do you choose?

If a baby is born before or at 22 weeks, most doctors will not intervene because the child will be too under-developed for even today’s technology and the smartest minds to save it. After 25 weeks, most doctors would intervene and try to save the child’s life. But in between that time is a “no-man’s zone” so to speak. Juniper was born in this critical time frame where no one knew what to do.
If the doctors did intervene, it would mean countless procedures on an infant, not to mention the endless medical expenses and psychological strain on Tom and Kelley’s marriage. If they intervened and Juniper did survive, there was over 80% chance that she would be disabled in some form.

Every inch of their daughter was under-developed. Treatment would be aggressive and would last several months, and even then she could a variety of problems. She could have autism, cerebral palsy, blindness, deafness, or both. She could have seizure, respiratory distress, and cardiovascular and neurological problems. Juniper was essentially a petri dish of disorders waiting to happen.

I think what scares me most about the human body is how much we still don’t know about it. I’m about to enter my third year of medicine this autumn and I thought by now I would be more confident about the body. But I still find extracts in my anatomy textbook, which are along the lines of “…the function of which is still unknown” or “…experts are unsure as to why-” and that terrifies me. Even with today’s technology – when we can perform surgeries in-utero (while the baby is still in the womb), when we have 3D ultrasound machines, when we can do genetic testing of parents to see if their child will have any severe illnesses or deformities – we still don’t know everything about the human body.

Learning about the human body is like looking into space. When my dad (cardio-vascular surgeon) talks so casually about his surgeries, it always amazes and scares me simultaneously because so much can go wrong with the body. Juniper French’s story is the proof of that. But technological advancements are being made and even though there is so much more we have yet to learn – that’s the beauty of it. There is always something new to discover and one day we may even have the cure for cancer, or ebola, or autism and advance to a future not even you or I could have envisioned.

Kelley’s original articles: http://www.tampabay.com/specials/2012/reports/juniper/

Radiolab podcast: http://www.radiolab.org/story/288733-23-weeks-6-days/

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