Hope for Lilliana
On May 17, 2011, Lilliana Dennis was born to Rhonda and Russell Dennis. But just a few hours after her birth, she was taken for testing that confirmed she was born with Trisomy 18. T18 is a chromosomal anomaly that results in an extra chromosome and has a high mortality rate. In fact, over 90% of babies born with T18 don’t live past the first year. Because of the high fatality rate, most doctors will not offer any treatment options.
After doing research and finding people who were living with T18, Rhonda and Russell decided to advocate for their daughter’s care. As a result of Trisomy 18, Lilliana was born with a large hole in her heart that would eventually affect her longevity. After seeing doctors who refused heart surgery, they met Dr. Sanjay Parikh, a pediatric cardiologist at St.Vincent Health in Indianapolis, Indiana.
Dr. Parikh agreed to do whatever it took to ensure Lilliana had the surgery. But he had trouble obtaining the consent of all the doctors who would be involved in her care. Rhonda and Russell went in front of the hospital’s ethics committee to plead their daughter’s case. After making a strong argument for their daughter’s future, the committee consented for Lilliana to have the surgery.
Lilliana just celebrated her first birthday and is improving every day. Taking care of her requires a lot of hard work and patience, but Rhonda and Russell can’t imagine life without their baby girl. There’s no question that a bias against Trisomy 18 exists within the medical community. But hopefully more stories like Lilliana’s will pave the way for change.