Paisley was just a year and four months old. Even though she faced tough times early on, she always kept smiling. She had Beckwith-Wiedemann syndrome, a condition where body parts and organs grow too big. Paisley had it since she was born, and it affected her tongue and internal organs.
Despite Madison Kienow checking the baby’s fingers, toes, eyes, ears, and tongue during two ultrasounds, she didn’t notice anything unusual until she saw her daughter’s tongue. At 21 years old, she chuckled, thinking her baby liked sticking her tongue out. She didn’t know that a rare hereditary disease caused it.
Madison had to have a cesarean section to give birth to baby Paisley at 31 weeks. Instead of a joyful day, she faced panic and anguish because her daughter needed immediate medical attention. Paisley had swollen organs and a tongue that filled her mouth completely, so she had to be put on a ventilator right away.
Madison couldn’t hold her baby. When she went to see her, Paisley was surrounded by tubes and wires. Doctors didn’t know what had happened but knew they had to act fast. They told Madison that Paisley needed to be airlifted to a specialist in Sioux Falls, which was three hours away from Aberdeen, South Dakota.
The baby was taken to the neonatal intensive care unit at Sanford Children’s Hospital. The next day, Kienow joined her daughter there. At first, Kienow felt discouraged when she met with a team of specialists who couldn’t give her a clear answer. But after several weeks of tests, doctors finally found the answer: Beckwith-Wiedemann syndrome.
“I blamed myself. When I was pregnant, I kept thinking, ‘What did I do to cause this?’ But it wasn’t something I could control. She was born with it. Maybe it’s meant to make me special in some way,” said Kienow. Now that Kienow has found the answers she needed, she talks to doctors about how to treat Paisley’s big tongue. Three months later, Paisley had her first surgery to reduce the size of her tongue.
