Last week, Chantel Gatica-Haynes posted about her daughter Sierra’s story. Sierra was born with Trisomy 18 and a congenital heart defect.
“Every decision for Sierra has been made with the goal of improving her quality of life,” Gatica-Haynes said. “When she was born, I was ready to let her go, IF her spirit told me to. But it didn’t. It said, ‘I’m here, and I’m fighting to LIVE.’ A mama’s heart just KNOWS.”
The doctors at her hospital refused to give her the heart surgery that she needed, saying that she was “only eligible for medical management” because “trisomy 18 makes her ineligible for heart repair.”
Gatica Haynes, a former PICU [Pediatric Intensive Care Unit] nurse, knew that this was not an acceptable answer because “If she doesn’t get her heart repaired…the cost will end up being higher if we don’t repair her heart.”
The doctors responded that “we’ve never lost a baby to VSD [ventricular septal defect] repair here in over 20 years…” and “her prognosis is poor, since she has full T18, and this hospital has a policy that won’t allow us to repair her heart, due to her diagnosis…”
Gatica-Haynes was losing hope, but she asked, “If you’re not willing to help fix her heart (which is not considered one of the more complicated cardiac repairs), then will you at least get formal refusals from the other hospitals in this state and document this, so our insurance will cover her heart repair somewhere else?”
The hospital agreed, and with the help of other moms of children with Trisomy 18, she was referred to Dr. James Hammel at Omaha Children’s Hospital. She left a message with his assistant and wondered if they would help or even care.
While she waited for an answer, she did some online research and discovered that “If [Sierra] had T21 (Down’s Syndrome), there would have been no doubt help.” She was refused help because she has Trisomy 18.
Later that day she received a call back “from James Hammel. Personally. He called to let me know that they had received her records and would help her.” And so, “a week later, there we were, trusting this man with [Sierra’s] life.”
The surgery was successful, and Sierra is now a beautiful one-year-old.
Sierra’s story is one of uncertainty and suffering, but Gatica-Haynes says that she is grateful for the journey despite trials. She wrote, “The landscape of my heart has forever been changed for the better through this journey with her. I’ve learned to take more risks with love, to be daring and whole hearted. Fear does not exist in the same space as love. And my heart has grown more than I ever knew possible. For this amazing, beautiful journey, I am eternally grateful. May we all have the chance to know a love like this.”
People with Trisomy 18 deserve as much hope and care as every person, regardless of what their genes are.