Unbelievable

“He was the size of a Coke can.”

It’s been years since interviewing Jocelyn for a video Jeff and I were producing, but that description of her severely premature baby still sticks in my memory.  The size of a Coke can. Unbelievable.

Jocelyn had developed preeclampsia during her first pregnancy and, in order to save her life, her baby boy was delivered via cesarean at 26 weeks (37-42 weeks is considered full-term).  He weighed just 1 pound, 6 ounces.

Connor was unable to breathe on his own, so he was immediately intubated and whisked off to the neonatal intensive care unit.  When Jocelyn was recovered enough to see him, a nurse took her in a wheelchair to visit her newborn in the NICU.

“His skin was translucent,” she told me. “You could pretty much see through him.”

Connor was so vulnerable the doctors had covered his tiny body in bubble wrap even though he was in a heated incubator.  Unable to hold him, Jocelyn was only permitted to slide her finger into the incubator and stroke her baby’s foot, which was smaller than her thumbnail.

Over the coming days, the reality of her baby’s situation sunk in. Jocelyn and her partner were warned that Connor likely wouldn’t survive.  Or if he did, he’d probably deal with lifelong medical challenges.

Preeclampsia is an insidious disease.  The warning signs can be subtle if not completely nonexistent.  The symptoms are not exclusive to preeclampsia, making diagnosis more difficult.  And, to date, no definitive diagnostic tool or cure is available in the U.S.

In the years since my own bout with severe preeclampsia, I’ve met countless individuals whose lives will never be the same as a result of this pregnancy-related disorder.  I met a 30-something man who explained that he and his wife shared a love of cross-country skiing.  Then he told me how he’d spread her ashes through their favorite snow-covered wooded area while on skis after preeclampsia claimed her life. He is raising their daughter as a single dad.

A woman I now consider a friend opted for adoption after the disease claimed her baby’s life, and nearly hers as well.  Years later when she inadvertently got pregnant, she terminated the pregnancy for fear preeclampsia would strike again.  To this day, she suffers great emotional angst over her choice.

And many of my “preeclampsia sisters”—as we jokingly refer to ourselves—deal with ongoing health issues, which are not well-understood by our primary healthcare providers, as the research on the lifelong impact of this disease is lacking.

For Jocelyn, preeclampsia meant simply going to the NICU to sit with her baby day after day, week after week, and then—month after month. She spent 10 hours each day at his side, intermittently crying.  At night, she slept while her partner sat with the baby.  She approved procedures, signed medical forms, and yes, witnessed first-hand what a neonatal transfusion can do for a tiny little boy who came into the world far too soon.

Last night I went on Jocelyn’s Facebook page just to admire the photos of a handsome little eight-year-old boy named Connor. He’s got a great smile, one that suggests a life of joy and silliness and love. From the “size of a Coke can” to a walking miracle. 

Unbelievable.

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Friends:  I'm co-chairing a dinner gala to benefit the Preeclampsia Foundation and the Foundation for America's Blood Centers.  I'd love to have you join us to help these two great causes.  You can even heckle me during my speech if that'll get you there. And if you can't attend, you can still support our effort by making a donation at: www.SavingGrace.preeclampsia.org. Thanks!