Living with Trisomy 18

Bradley Mattes   |   December 14, 2023

Trisomy 18 returned to headlines recently as a pregnant Texas woman carrying a child, living with Trisomy 18, fought in the courts to procure an abortion. Thankfully the Texas Supreme Court ruled against the abortion, but sadly Kate Cox traveled out of state to end the life of her baby.

Contrary to much of what you read in the media; Trisomy 18 (T-18) is not an automatic death sentence. It is true that most babies with this condition do not survive, but we are becoming aware of more and more children who do – some into adulthood. The longevity of individuals with T-18 has gotten the attention of the research world. A case report was published in the National Library of Medicine.

I first became familiar with T-18 when shortly after her birth in 2011 we featured Lillianna Dennis and her family on an episode of our weekly TV program, Facing Life Head-On. Early on her parents had to fight for critical heart surgery needed to save her life. Never underestimate the tenacity of a “mother bear” fighting for her children.

More recently Lilliana, with the assistance of a walker, walked into her church for the first time when she was nine years old.

Megan Hayes, age 40

Megan Hayes at 40 in 2020 was the second oldest person in the world with T-18 to survive. Our staff has been unable to find any information on her since then.

Donald R Heaton lived to be 22 in spite of doctors’ prediction of months and he was aware of his surroundings and interactions. In his 2015 online obituary two posts demonstrate that Donald wasn’t alone in living with T-18.

  • Vanessa Ward wrote of her son who was 25 and a cherished member of the family.
  • Toni Barnes proudly posted about her grandson, age unknown.

Bella Santorum is known to many of us in the pro-life movement. She is the daughter of former Pennsylvania senator and presidential candidate, Rick Santorum, and his wife Karen. An article showed the doting parents celebrating Bella’s 12th birthday. When Bella was born their daughter was labeled “incompatible with life.” She is now 15.

Elaine Fagan

Contrary to doctors’ expectations that Elaine Fagan would live only days, she lived for 25 years. It was written in her obituary that, “she created a great bond amongst her family, friends and anyone who met or knew her.”

When Jennifer Holyrod gave birth to Amber who had T-18, she said that in the beginning it was “as though Amber was written off” because of the odds against her continuing to live. But in spite of the aggressive medical intervention, Amber wouldn’t give up and she started school this year.

Kayden “the HOPE” has a robust Face Book presence and is now 22. If in doubt check out his FB page. He appears to have a real zest for life.

There are similar threads that run through each of these remarkable lives. The children and adults are consistently happy, have much more mental awareness than many in and out of the medical community give them credit for, and have a positive impact on those around them.

They face truly difficult health issues, and because of these medical realities their families accept each day as a gift. But when asked, they would be quick to say it was all worth it. 

Defending Life,

Brad Mattes

President, Life Issues Institute

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