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The real faces of distressed babies

Monica Beyer is a mom of four and has been writing professionally since 2000, when her first book, Baby Talk, was published. Her main area of interest is attachment parenting and all that goes with it, including breastfeeding, co-sleepin...

You can't put a price tag on miracles

The "distressed baby" statement by AOL’s CEO has hit a nerve with not only the baby’s mother, but others who question the decision to call out specific medical cases to highlight the need to reduce benefits in other areas. These moms know how priceless "distressed babies" are because they’ve lived through it.

Lisa’s story

Harrison in the hospital | Sheknows.com

Lisa lives in North Carolina with her family and she learned firsthand what having a “distressed baby” was all about when her second baby was born in 2009. Her pregnancy proceeded normally until an 18-week ultrasound revealed a few concerns. A high-risk obstetrician didn’t really feel that there was anything seriously amiss, but she pushed for further testing as she felt that something wasn’t right. An echocardiogram revealed a heart problem that would require surgery, but it wasn’t supposed to be an urgent issue. However, she opted for an amniocentesis, which revealed that her baby had Cat Eye Syndrome — a genetic disorder that has the potential for a number of life-threatening abnormalities.

Harrison (see his blog here) was born at 39 weeks at a healthy weight, but he was immediately whisked to the NICU because of his heart condition. “Immediately after birth, it was discovered that Harrison had anorectal anomalies requiring an immediate colostomy and future other surgeries,” she explains. “At two days old, he was already in surgery. Two weeks later, it was discovered that he had biliary atresia, a life-threatening liver disease that would eventually require a liver transplant. With this discovery, came the immediate need to perform a procedure that would possibly prevent a liver transplant for several years. The surgery was done and he immediately became septic.”

He had open heart surgery at two months of age and was soon put on a waiting list for a liver transplant. The first liver he received didn’t respond, so he had to undergo an additional liver transplant. “A miracle, absolutely,” she tells us. “A million dollar baby? We have far exceeded it. Liver transplants alone are in the range of $500,000 and Harrison has had two. This does not include the costs of 18 other surgeries he had before this, the four months in the NICU stay, the two months in ICU post-transplant or the meds required to keep him healthy and alive.”

Harrison today | Sheknows.com

He is now four years old and making great progress, considering his doctors were never really sure what to tell his parents about his future. As far as Armstrong’s comments, she knows that he spoke without forethought, not realizing the gravity of the situations he talked about in such a flippant manner. “We live in a world driven by the dollar sign,” she says. “Does it make what he said right? No. But it does make you think — how many other companies make similar cuts in benefits for the same or similar reasons? To me, that is more scary and heartbreaking than the fact he was ignorant enough to say aloud why the company was making the benefit cuts. Regardless, the comment showed little heart for these so-called ‘distressed babies’ that deserve just as much a chance at life as the rest of us. But I always say, until you walked a day in our shoes, you really don't understand and I know Mr. Armstrong has not. I am grateful for the insurance coverage we've had throughout Harrison's life and hope that the light given to this comment will help any CEO or company realize that life matters, no matter what the cost.”

More on premature babies

Think your baby won't come early? Think twice and prepare!
Benefits of kangaroo care for preemies
The ethics of selling pumped breast milk

Photo credit: Fuse/Getty Images
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