OKLAHOMA CITY — An Oklahoma City woman just became the likely second-oldest person in the world with her genetic disorder.
Megan Hayes recently celebrated her 40th birthday and she has Trisomy 18, or Edwards syndrome.
Trisomy 18 is a condition caused by an error in cell division, like Trisomy 13 (Patau syndrome) or Trisomy 21 (Downs syndrome).
Trisomy 18 happens when there are three copies of the 18th chromosome in the body’s cells
Expecting mothers over 35 are often screened for Trisomy 13, 18 and 21.
Loose projections on the average survival rate of a newborn with Trisomy 18 span three days to two weeks.
However, a University of Oklahoma geneticist says that projection is a skewed number because most babies with Trisomy 18 aren’t born alive.
There are often severe heart defects, and brain structure anomalies.
Many families choose not to put the baby through extreme measures to try and fix these issues if they are born alive.
Megan’s parents, Ron and Sara, say they never imagined they’d be celebrating their daughter’s 40th birthday
They say she was fortunate enough not to have most of the severe complications of Trisomy 18. Megan’s complications are mostly developmental.
Rona and Sara say belonging to a group with other parents from around the world with Trisomy children has been a vital source of strength and support.
They are the Oklahoma chairs for SOFT -- the world’s largest support community and a huge resource for information for families.
Ron and Sara say they realize most people’s babies with Trisomy 18 won’t live to 40, but that Megan is an example of the quality of life that may be possible for those who do live into toddlerhood and even teenage years.
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