Tampa Bay Times, October 18, 2013, Kelley Benham, Times Staff Writer
Our baby was dying a half-dozen ways. She was born in the 23rd week of pregnancy weighing 1 pound, 4 ounces. Twiggy and translucent, her body heaved along with the mechanical whooshing of a ventilator that kept her alive while battering her lungs. No matter what the doctors did, she would probably end up dead or broken.
In the 196 days we sat by her bedside at All Children's Hospital, we signed consent forms allowing nurses to shove tubes down her throat and slip IVs into her thready veins. We consented to central lines that carry an overwhelming infection risk. We consented to chest tubes, blood transfusions and an operation so risky the surgeon fully expected it to kill her.
Signing those forms was my first official act as her mother, and the responsibility made my cheeks hot. But I didn't read a single one. The only thing I remember about any of those forms was how it felt to write next to my name that I was her mom.
Now the medical community is engaged in a furious debate about consent forms used in important pediatric research. Major studies conducted on babies like mine have come under attack from the consumer advocacy group Public Citizen, which says the research put babies at risk, and that parents were not adequately warned.
The debate has ensnared dozens of research institutions and just about every notable pediatric bioethicist in a fundamental debate over how to conduct research on the most vulnerable people on the planet. The government issued a scolding, the researchers and their supporters lashed back, and the critics are calling for review and derailment of current and future research.
This summer as I listened to hours of debate in which very smart people evoked Tuskeegee and asked "How many babies must die?" it occurred to me that in all the bluster an essential truth was being lost.
All babies born so young are experiments. The rest is just paperwork.