Unrelenting Advocacy A Parent’s Love and Tenacity Leads to Duke Eye Center, and an Appeal to Innovate
(L-R) Kiara, Sharon Freedman, MD, and Allison Umfress, MD, pediatric ophthalmology fellow before Kiara’s surgery.
BY VICKI FRYE
A
fter a normal pregnancy and delivery, new parents, Nimesh Nagarsheth, MD and his wife Benita were thrilled to welcome their baby daughter Kiara Indie on July 4, 2019. However, within minutes of her birth, medical staff observed that Kiara’s body was covered with wide-spread port wine marks and other potential abnormalities were also quickly detected. In order to gain full visibility to Kiara’s condition and identify any discernable health issues, the medical staff at Mount Sinai Hospital in New York City, performed a full body MRI and ultrasound, neither of which confirmed clear findings.
DUKE EYE CENTER
2021
Recognizing that port wine marks can be characteristic of Sturge Weber Syndrome (SWS), a rare disorder, Kiara’s parents quickly became passionate advocates for her medical care. Other possible health challenges caused by SWS can include seizures, glaucoma, hyperreflexia and attention deficit and hyperactivity disorder (ADHD). For this reason, Nagarsheth, a former Duke OBGYN resident and now Director of Gynecologic Oncology and Robotic Surgery at Englewood Health, NJ and Clinical Professor at the Icahn School of Medicine at Mount Sinai continued to pursue an understanding of her condition from specialists across the U.S. His persistence helped to uncover that Kiara also had several ongoing issues in her left eye, including elevated eye pressure (ocular hypertension), as well as mild haziness of the left cornea and possible accelerated left eye growth.
