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MUSC patient is Charleston's ambassador

by Brenda Rindge
Of The Post and Courier
Charlotte and Adam Edwards of James Island know the role March of Dimes research played in helping their son, who was born a “micro-preemie” two years ago.
Legare Edwards

 “When Legare was born, his lungs were so immature that they gave him surfactant to help them develop,” Adam Edwards said. “That’s something that the March of Dimes is largely responsible for developing.”
In the 1980s, therapy using artificial surfactant was developed by March of Dimes grantee T. Allen Merritt of the UC San Diego Medical Center. The artificial substance keeps the baby’s lungs from collapsing, much like soap in water keeps a bubble from collapsing.
“Without it, Legare wouldn’t be here,” Charlotte said.
Premature birth touches half a million babies and their families every year, including 173 babies in South Carolina each week, according to the March of Dimes.
“No parent should have to experience the life-changing consequences that can result from having a baby born too soon,” said Charlotte, who with her husband and son, is serving as the 2009 March for Babies Charleston Ambassador Family.
She knows what she’s talking about.
On Feb. 17, 2007, Adam and Charlotte, then 25 weeks pregnant, were at Al di La with her parents celebrating her mother’s birthday.
“Basically, we were ordering appetizers, and a few hours later, I had a 4-month premature baby and a wife in ICU,” said Adam.
Charlotte, who had been to the doctor just a couple of days before, had a healthy pregnancy until her stomach started hurting at the restaurant.
Although they thought it was heartburn, when the pain continued, they headed to the St. Francis emergency room as a precaution.
There, after just a few minutes on a fetal monitor, doctors decided she needed an emergency cesarean section because the baby’s vital signs were unstable.

“They said they had to take the baby, but they really had no idea why,” Adam said.
Baby Legare, who was due May 26, instead was born Feb. 17, weighing 1 pound, 11 ounces and just 13 inches long.
Hours later, Charlotte lay covered by a blanket in her hospital bed, as the couple worried about their newborn.
“She brought her hand up from under the covers and it was covered in blood,” Adam said. “It turns out she was oozing blood from her incision.”

Nurses piled sandbags on her to try to stop the bleeding.
“The doctor came in and couldn’t get a heart rate or blood pressure,” Adam said. “She was bleeding to death on the spot, and they had no idea why. It was like something you see on a medical show. They took her away, and it was a couple of hours before they could get her stabilized.”
Charlotte spent four days in intensive care, part of it in a medically induced coma. She woke up Feb. 19, her 30th birthday.
Meanwhile, their baby was whisked away to the Medical University’s neonatal intensive-care unit, with doctors giving him about a 20 percent chance at a normal life.
 “The doctor also told me that just five years ago they would not even attempt to save his life,” Adam said. “This statement will stay with me forever.”

Legare was so premature that his eyes still were fused closed and his ears and lungs weren’t fully developed. His skin felt “tacky,” his parents said.
“I didn’t even see him for a week,” Charlotte said.
Legare was diagnosed with bronchopulmonary dysplasia (chronic lung disease), respiratory distress, failure to thrive and very low birth weight.
He spent 118 days in the NICU, battling infections, two bouts of pneumonia and enduring surgeries as he slowly gained enough strength to go home.
“Basically, he developed in a medical environment,” Adam said.
Charlotte read books, researched the Web and kept a journal so she would understand what was going on with her baby.
“I wanted to be as involved as possible and be my child’s advocate,” she said. She thinks early intervention was vital to his progress.
As Legare grew stronger, Charlotte gave him “kangaroo care,” holding her baby against her, skin to skin. “I didn’t hold him until he was 3 weeks old,” she said. “That was the first time that I could lay back in the recliner, close my eyes and even just for a second feel like a ‘normal mother.’ “
When he was weaned from the ventilator after 75 days, “That was the first time we were able to see his face without any tape on it,” Charlotte said.
Legare finally was discharged June 14.
“It was amazing how the days would come and go, yet the NICU would stay the same,” Charlotte said. “You almost forget that there is a world outside of the hospital.”
But things at home were no easier.
“That was a little bit of a roller coaster as well,” she said. Appointments with specialists filled their calendar as they carefully monitored their baby’s progress. “It wasn’t until November that we had any normalcy.”
Today, Legare is a typical 2-year-old.
“He’s starting preschool in the fall, he plays with friends, he loves bike rides and trucks,” Adam said. “He’s a little small and his speech is a little delayed, but that’s about all. Thankfully, at this point, we think we’re part of that 20 percent.”
Charlotte now knows she had HELLP syndrome, during which elevated liver enzyme levels and a low platelet count cause the body to reject the baby and destroy the mother’s red blood count. It has no clear cause, but she has a chance of having it again, a chance the couple aren’t willing to take right now.
“I feel like we already won the lottery, so why chance it?” Adam said.
Charlotte agrees.
“Besides, we already have a million-dollar baby,” she said. “Literally.”
Editor's note: This article ran in the March 23 issue of the Post and Courier and is reprinted with permission.

Friday, April 3, 2009

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