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Smart Woman: What is Trisomy 18?

Former GOP presidential candidate Rick Santorum drew attention to a rare genetic disorder during his campaign. His 3 year old daughter has the rare genetic disorder. In today's Smart Woman report, a family talks about their child who is also living with the disorder. <br> <br>
Little Livia Harget plays with her mom who treasures every smile, every moment. Livia just celebrated her first birthday, but doctors didn't think she would come this far.

"They said even if she makes it to birth, don't expect her to make it through birth," said mother Bethany Harget.
 
When Bethany was pregnant, tests revealed something was seriously wrong, Livia has trisomy 18.

"I had doctor after doctor telling me, you need to plan a funeral for your daughter, before I had even met her," said father Eric Harget.

Children with trisomy 18 have three copies of chromosome 18, instead of two.

Dr. Shawn McCandless of UH Case Medical Center said, "Having the extra copies of those genes leads to some standard kinds of birth defects including very significant abnormalities of brain development and in particular abnormalities of heart development."

Most pregnancies involving trisomy 18 end in miscarriage or still birth. Less than 10 percent of babies who are born alive make it to their first birthday.

Those babies struggle with heart, lung and immune issues that constantly threaten their life.

"Children with these conditions have a very high risk of just stopping breathing during episodes of viral illnesses colds or flues," said Dr. Shawn McCandless.

Doctors told Livia's family she might not survive a single day.

"Every day means a lot of us and we cant imagine not having her," said Eric Harget.

"We have days where all you want to do is cry but I think for us having her brings so much joy that it kind of erases that," said Bethany Harget.

They hope their daughter can keep defying the odds.

Trisomy 18 occurs in 1 out of every 5 to 8 thousand births
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