“I have no doubt that she will make this life anything she wants it to be and she’s not going to let anyone get her down,” says Piper’s mom, Eleesha.
After finding a mass on Piper’s right side during Eleesha’s 20-week ultrasound, doctors immediately referred her to both our Colorado Fetal Care Center and our Center for Cancer and Blood Disorders, specifically the Vascular Anomalies Center. Here, she got specialized care for CLOVES syndrome, a very rare condition that affects her veins and other parts of her body.
Piper was born at 28 weeks and after many tests and a surgery to reduce her lymphatic malformation, Taizo Nakano, MD, Medical Director of the Vascular Anomalies Center, used genetic material to find a mutation in a gene called PIK3CA. This mutation is referred to as PROS.
“We were able to be the first diagnosticians to recognize the condition and to help the neonatal team with supportive care around what was quite an impressive, complex vascular anomaly,” says Dr. Nakano.
CLOVES syndrome is caused by a collection of vascular malformations that are related to the mutation in the PIK3CA gene and can often cause tissue overgrowth like on Piper’s hand and arm. Although kids with CLOVES all experience the condition and symptoms differently, medication and future surgeries will allow Piper to continue to be the vivacious little girl she is today.
“I know she has the right people in her corner fighting for her,” says Eleesha.
To learn more about vascular anomalies and how our care team at the Vascular Anomalies Center is pioneering treatment, visit: https://www.childrenscolorado.org/doctors-and-departments/departments/vascular-anomalies/?utm_source=youtube&utm_medium=social&utm_campaign=slg_ccbd
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