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You're Not Alone: How Mothers of Children Born with Rare Condition Comfort and Support Each Other on CarePages.com
Date:3/6/2008

that many parents were unaware of recent advances in the treatment of omphaloceles.

"The majority of 'O' babies do very well, but many of our new CarePages and MOO members often comment how quickly they were told to terminate their pregnancies," she says. "Our goal is to inform the public that they should not lose hope after the diagnosis of an omphalocele because good options are available."

After exhausting all conservative approaches to treatment, the Doyles concurred with their physician late last year that surgery was the only option. Starting December 3, Aidan had seven surgeries. Most of that time he was heavily sedated and paralyzed, his muscle and fascia sutures hung from the ceiling to stretch them in order to close the defect. The sutures were so taut that Aidan was nearly levitating off the bed. On Christmas Eve, the Doyles got the news that Aidan's belly was finally closed.

Mike wrote on his CarePage that afternoon, "Sarah and I will have our little boy back for Christmas. It's the most wonderful thing I've ever experienced in my life."

Aidan's health has continued to improve, and, in early February, Sarah was able to hug him for the first time. If all goes according to plan, he will be home for the first time later this month.

"We've received such a tremendous outpouring of support from family, friends and some amazing people we've met only on CarePages," says Sarah. "Many of the MOO parents, including us, have opened our CarePages to others whose children were recently diagnosed with an omphalocele to give them some idea of what to expect. Journaling in CarePages also has been therapeutic, and our entries provide a valuable record of all his medications and treatments.

"I stay in touch with parents of omphaloceles through CarePages and MOO. I'm inspired by Aidan and this whole experience to give back to others. People tell me I've already earned an honorary degree in nursing and I might go into this field when
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SOURCE CarePages.com
Copyright©2008 PR Newswire.
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