Delaney (Laney) and Delilah (Lilah) Monicken
Laney and Lilah’s Mom: Emily Monicken
Lilah and Laney are feisty, happy twin sisters. They share a diagnosis of cerebral palsy, but that is just one aspect of their lives. More importantly, they dance, they laugh and they occasionally throw things. With that said, at the time of their birth, the future they now share looked more than uncertain.
“They were born with what’s called Twin-to-Twin Transfusion Syndrome, or TTTS,” their mother, Emily, says. “It’s where one of the twins receives too much blood and nutrients from their mother before birth, and the other receives too little. Lilah and Laney’s condition was missed in my initial ultrasounds.”
As a result of their condition, Lilah and Laney were born early at just 28 weeks. At the time of their birth, Lilah weighed 3.1 pounds. Laney weighed just over 1 pound. They would spend the next 75 days in the neonatal intensive care unit.
“I work in health care, so there’s a part of you that thinks you understand what having a medically complex child would entail,” Emily recalls. “But there’s just no preparation or level of knowledge that can show you all that goes into it. It was completely overwhelming at the beginning, and there’s so much uncertainty because you don’t know how your children are going to develop as they get older. “
Lilah and Laney both experienced physical delays throughout their infancy. At 12 months old, both girls were diagnosed with cerebral palsy, with Laney’s condition being more severe. They began treatment at Gillette Children’s and they’ve been coming here ever since. “I really don’t know where we’d be if it wasn’t for Gillette,” Emily says. “To have a hospital that is completely focused on treating children who have disabilities in our backyard has been such a blessing. It’s allowed us to get to where we are today.”
Laney and Lilah are currently thriving. They visit Gillette for outpatient therapy, and outside of their care, they’re mainstreamed with their peers in school, participate enthusiastically in dance classes and have their whole lives ahead of them. Sure, they face challenges, but in this—and all things—they face those challenges together.