Cases of trisomy 18 may rise as many states restrict abortion. But some women, including these two Utah moms, choose to have the babies, love them tenderly and care for them devotedly.
Cases of trisomy 18 may rise as many states restrict abortion. But some women choose to have the babies, love them tenderly and care for them devotedly.
Lennie Cardwell-Risenmay, who was born with trisomy 18 and is now a little over a year old, with her parents, Ashlee Wiseman and Clint Risenmay, at their home in Midvale. "A still small voice took over me," Ashlee said. There has to be something that can help her. And there has to be someone who can help."
This is the story of two families who chose to have babies with trisomy 18 but took very different paths in how they cared for them.They sold everything they could, packed their belongings in a U-Haul and drove off to start a new life near Salt Lake City, where Carey lives. Their baby, Lennie Cardwell-Risenmay, was born Jan. 9, 2023, at the University of Utah Hospital, weighing 3 pounds, 15 ounces. Wiseman and Risenmay fell in love with her immediately.
Wiseman quit work when she and Risenmay brought the baby home to the family’s apartment in Midvale. They also have a son, Xyeno, 4, who has autism.She and Risenmay have routines with Lennie that make them happy. They put a blanket on the floor and watch her smile and roll. Alarms go off day and night when the monitors measuring Lennie’s blood oxygen level, heart rate and the functioning of the ventilator pump detect a problem.
But, she said, “I do this because she’s my baby, and I love her more than anything else in this life.” His path as a trisomy 18 expert was unexpected. In the summer of 1979, when he started his academic career at the University of Utah, he found himself with a new patient named Kari Holladay. She was 2 years old and had trisomy 18.
Carey said he used to share this view but changed his mind when he got to know families who sought intensive treatment for their babies. Now, when they are refused such care, Carey helps them find hospitals willing to provide it.“Before, I had perceived this as the parents’ and the child’s misfortune, a kind of tragedy, a burden,” he said. But then he saw that the children brought meaning to their parents’ lives.
Hank was born Oct. 22, 2019, and whisked to intensive care. A nurse read a report aloud. “It’s trisomy 18, which is incompatible with life,” Shauna Demars recalled her saying.“I want him to come home,” she said. “I want to take him home.” Hank came home a week later to the couple’s modest ranch house. He was in hospice care; had supplemental oxygen to keep his blood oxygen levels high enough; and had a heart monitor, a blood oxygen monitor and a feeding tube that was hooked up every few hours. He slept in bed with his parents at night.
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