Harper Grace was diagnosed with Trisomy 18 (Edwards Syndrome) while in utero. The doctors considered the condition “incompatible with life,” but despite the odds stacked against her, Harper is approaching her fifth birthday. While a quick internet search will tell you that most people with this diagnosis survive less than a few weeks after birth, more and more stories are surfacing of children defying these odds and living years — even tens of years —with their families.
Bella Santorum, Faith Smith, Melody Thenhaus, and Kayden McClanahan are just a few names of children with Trisomy 18 whose parents have fought to give them a chance at life.
Due to the difficulties involved involved in caring for a child with Trisomy 18, most doctors recommend abortion when the diagnosis is confirmed. They claim that there will be no quality of life, or even no life at all, despite what children like Harper are proving. But the fight for protection and life does not end at birth for these children. In a “Special Books by Special Kids” video interview, Harper’s mother discussed the neglect and opposition Trisomy 18 children receive in hospitals:
“They are not [given a fair chance]. Very few hospitals in the country are willing to provide full interventions to kiddos with her condition. There are many children that we know of that have been denied even basic human rights like a feeding tube to help them eat or a little bit of oxygen if they needed it, and these families were forced to take these kiddos home to die.”
The majority of the medical community believes that these children don’t matter enough to help them, but their families disagree. On his 18th birthday, Kayden McClanahan’s mother shared, “He may have been through alot and we may have been through alot but he/we have had an amazing 18 years full of LOVE, happiness and lots of fun! Drs talked about no quality of life[;] does this look like no quality???”
READ: Mom of daughter with Trisomy 18 fights to change the message for families like hers
Harper Grace’s mother wants the world to understand, “Her life matters. It may be different than ours, but it matters.” When Harper was diagnosed prenatally with Trisomy 18, her mother just wanted to be able to tell Harper how much she loves her. She was able to do that, and wants the same for all the families dealing with Trisomy 18:
I hope that her life and her journey, and the fact that she is here at almost five and doing very well, that her legacy will help pave the road for kiddos with her condition in the future to receive fair care, to be given a chance to have this kind of life with their families. To have a chance at life and be treated as equal human beings.
Harper’s mother described life with Harper as “miraculous, amazing, hard but great,” and hopes that Harper’s success can change the rhetoric surrounding Trisomy 18 and help pave the way for children with the condition to be treated as the valuable human beings that they are.
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