The medical pilgrimage of 15-week-old Cecillia took a hopeful turn Thursday when a genetic test revealed her condition is not necessarily fatal as was previously feared.
Cecillia was born June 9, 2019, the daughter of Brooklyn Smithson and Monty Westphalls of Jefferson. On June 13 Cecillia stopped breathing, and Jefferson Police Department Captain Heath Enns and Officer Cole Jackson responded and administered infant CPR while rushing her to the hospital.
Emergency room staff at the Greene County Medical Center were able to resuscitate Cecillia and restart her heart. She was later transported by air ambulance to Blank Children’s Hospital in Des Moines.
Cecillia was diagnosed with two congenital genetic disorders, trisomy 13 and Pierre Robin syndrome, as well as muscular dystrophy, spastic ataxia, heart condition, laryngomalacia and other conditions. She spent the first few months of life in the newborn intensive care unit and did not come home until Sept. 10.
“Beyond miraculous update for Cecillia!” said Christy Smithson, Cecilia’s grandmother, on her Facebook fundraising page Thursday. She provided a detailed explanation of Cecillia’s chromosomal condition and the good genetic news the family received this week.
The upshot is “the diagnosis of being fatal is now off the table,” Smithson said. “Happy tears cannot even come close to expressing the emotions we are currently feeling. Conditions we can live with. Death, however, we struggled each day to accept.”
The baby is not out of the woods yet. The Pierre Robin syndrome and laryngomalacia can still be life threatening, but surgery could correct several problems.
“Yes, she still has life-threatening conditions and is critical,” Smithson said, “but we have been given the miracle of hope. They are now saying this form (of genetic defect) will not be fatal as long as her health is managed. This is super huge news for our family, and I wanted to make sure to share with all of you!”