Kayli, a True Warrior, is Loving Life—Trisomy Style

March 12, 2013

Kayli was born with Trisomy 18, also known as Edwards syndrome, a chromosome disorder. She survived beyond the five percent chance she was given by the high risk obstetrics and genetic counselor. She went on to have open heart surgery for her atrial septal defect/ventricular septal defect/patent ductus arteriosus/double right outlet.

Eight hours later, in the PICU room, she passed away. Thirty-two minutes later, she came back to life! In the months that followed, she survived seven weeks with Endocarditis and Sepsis because a hospital denied her life-saving antibiotics, blatantly refusing to help a child with trisomy 18. Shortly after recovering from the life-threatening infections, Kayli survived a homecare nursing accident, resulting in a tracheostomy.

While learning to care for Kayli now, her Daddy and I decided to give her a more permanent feeding tube because we never expected her to be able to eat again, after the damage the prolonged anoxia (lack of oxygen) had caused her brain. The surgeon perforated her bowel, and placed Kayli’s G-tube in her colon instead of its proper place, in Kayli’s stomach. The surgeon left her to die for three weeks. But Kayli has a will like no other. She survived!

Kayli is a miracle many times over! Her name means warrior, and she has proven it a good fit. Kayli has the Lord to protect her, and her three older brothers to guide her. Each brother has a rare condition of their own, and miracles of their own to share too! Kayli will be four years old in April, and she learned to hit her switches, play with toys and smile. And she has recently taught us not to underestimate her, as she lunges forward in potty training! Kayli has inspired me to help start a nonprofit organization, Trisomy Families, to help others who have a loved one with trisomy.

Stay Connected

Sign up for updates straight to your inbox.