Social networks help families whose babies have rare genetic conditon.

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by JEAN ENERSEN / KING 5 Healthlink

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KING5.com

Posted on August 28, 2012 at 12:00 PM

Updated Tuesday, Aug 28 at 5:30 PM

Before baby Lucy was even born, Mildred and Jesse Bay learned she has a genetic condition called Trisomy 18. It causes heart defects, physical abnormalities, and severe intellectual disability. The survival rate is extremely low.

"We decided at that time that we were going to continue the pregnancy and see how long she was going to live," explained  Mildred Bay.

Bay was familiar with Trisomy 18 from medical school. She's a pediatrician.

"In my training, what you get is a lot of statistics, which are rather grim," said Bay.

The piece that was missing in medical school, was training on how to treat babies like Lucy. So Mildred Bay did what many parents do.

"Just like anyone else, when you're confronted with something rare, you can go to the internet and see what's there," she said.

In her search for information she found instead a community of families just like hers. On an increasing number of social network sites they share hope and ideas.
 
"The families on these sites are really the pioneers in trying to discover what's worked well for them," Bay said.

Dr. Benjamin Wilfond
of Seattle Children's Research Institute wanted to learn more about the social networks. In a study, recently published in the journal Pediatrics, he surveyed families from the sites. They reported that doctors often discourage medical treatments for their infants.

When he asked families what they had heard from doctors, "They would talk about children being incompatible with life. They would talk about a life of suffering. They would talk about meaningless life," said Dr. Wilfond.
 
But where doctors saw futility, some families wanted a bigger voice in deciding their child's care.

"What we're trying to do is to allow physicians to increase their imagination about what life may be like for some of these kids," said Dr. Wilfond.

The Bays searched out Seattle Children's Cardiologist Dr. Meg Vernon to help them with Lucy's care. Lucy's heart has a defect. She may need surgery. It's another decision they must face.

Connecting with other families on social network sites could help them find what has worked for others. Even though they know Lucy's lifetime may be limited, they described the richness of having their baby in their lives.

"An incredible amount of love and joy, and hope, gratitude that we did not have before, for small things, not big things but small things," said Lucy's mother.

 
 

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