IOWA CITY, Iowa — Jackson Casteel’s parents were given a bleak outlook after he was born at their local hospital in central Iowa: “Enjoy him for as long as you can.”
Jackson’s parents had prepared for the worst, that Jackson might not survive birth, but as his mother Sara tells it, she knew from the moment he was born that Jackson was a fighter.
So, the first-time parents put the heartbreaking moment behind them and sought further care at University of Iowa Health Care Stead Family Children’s Hospital.
Prenatal tests showed anomalies, and she was put on bed rest due to high blood pressure. Sara went into preterm labor at 34 weeks, and, though she and her husband, Ross, were told of the possibility that he might not be breathing, Jackson was born at their local hospital “screaming at the top of his lungs,” Sara remembers. “It was the best sound ever.”
Born with multiple brain bleeds and a potentially fatal form of dwarfism, he stayed in the hospital’s neonatal intensive care unit for four weeks. After his discharge, Jackson’s parents were told to enjoy their remaining time with him at home.
“They didn’t have much hope for him,” Sara recalls.
The couple obtained a referral to medical geneticist Amy Calhoun, MD, at Stead Family Children’s Hospital and drove their son three hours to Iowa City. Calhoun – a doctor known for her advanced knowledge of rare genetic conditions – offered insight into what the future might hold.
Read Jackson’s story here.