Oldest woman in the US with Trisomy 18 turns 40; parents told at birth their daughter would live four months

When Megan Hayes was born in 1980, her parents were told they would only have weeks or months with their daughter.  Her mother, Sara, told the local news in Oklahoma City, Oklahoma, “When Megan was born, she immediately went to the NICU.  I didn’t get to see her at all until the next day, and that was looking through the window.”  She explained that Megan’s medical team did extensive testing and “called us back in and said she’s got trisomy 18 and said just take her home she will probably die within four months.”

Trisomy 18 is a rare, often life-limiting genetic condition.  Babies born with Trisomy 18 sometimes have severe congenital heart defects and other issues that can be difficult to address.  Sadly, for babies with Trisomy 18 who may be a good candidate for life-saving surgery, parents often have to fight for surgery and babies with Trisomy 18 are wrongly described as “incompatible with life.”

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Megan was born with a healthy heart, but her medical team diagnosed other problems and prepared the family to have only a very brief time with their daughter.  Megan’s father, Ron, recalls, “Each day you are wondering what’s going to trigger this?  What’s going to cause her to die?” 

Despite the predictions, Megan continued to grow and meet many milestones.  Her mother says, “I think when she lost her first tooth I almost cried.”  All these years later, the Hayes continue to find great joy in their daughter’s life.  Ron told the news, “It’s a delight.  She wakes up every morning happy, smile on her face.”  Her mother added, “She’s eager to please.”

Now at age 40, Megan is believed to be the oldest living person with Trisomy 18 in the United States and the second oldest in the world.  The Hayes’ story has been an inspiration to families around the world fighting for proper treatment, care, and therapies for their children with Trisomy 18.  Many families who receive a diagnosis of Trisomy 18 before birth are pressured to end their child’s life in abortion as many doctors mistakenly continue to believe that such children are “incompatible with life” or will have “no quality of life.”

Ron assures other parents, “It’s not a death sentence for having a child like this.”  Ron and Sara have made advocacy for other Trisomy parents a big part of their life and serve as co-chairs for the Oklahoma Chapter of the Support Organization For Trisomy.  Sara says, “These kids really are living, and they are doing these things.”

Megan has no shortage of joy in her life.  Her infectious laughter is easily provoked.  She enjoys when her mother reads books, watching sports with her dad, and going to church on Sundays.  According to the news report, Megan even graduated from high school.

As more parents fight for the lives of their children with Trisomy 18, we will likely see other children with the condition far surpassing doctors’ predictions.  In Megan’s case, her medical team has no explanation.  Sara says, “The doctors don’t know what to tell us.”  The Hayes don’t feel the need for any explanation, accepting that their daughter’s life will never be fully understood.  “She’s a miracle, I don’t know how else to explain it,” said Sara.

Although many babies with Trisomy 18 respond to surgery and therapy, some babies with the condition will not have a long life due to the complications that can arise.  Even in these cases, the child’s life is no less precious and he or she deserves the opportunity to be born and live as long as naturally possible.  Charitable organizations are raising awareness and providing aid to parents in this difficult and heart-breaking position.  Hope and healing are possible, and abortion is not the answer.

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