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Pediatric Patient Born with Half a Heart Travels to Nation’s Capitol to Advocate for Better Health Care for Children
06/28/2013

TAMPA, Fla. (June 24, 2013) – Last week, the Vidal-Velasquez family from Tampa joined dozens of other families from across the United States on Capitol Hill to share their story of heartache and hope to help Congress understand the importance of protecting pediatric care.


Four-year-old Jaden Vidal Velasquez was born with Hypoplastic Left Heart Syndrome, a congenital heart defect in which the left side of the heart is severely underdeveloped, and underwent open-heart surgery at St. Joseph’s Children’s Hospital when he was just 4 days old. Since then, he’s undergone two additional open-heart surgeries, several catheterizations, the insertion of a gastric feeding tube and months of physical rehabilitation, and continues to receive care in the hospital’s Chronic-Complex Clinic.


His family traveled to Washington, D.C. as part of the Children’s Hospital Association’s Family Advocacy Day. The June 18-20 trip included one-on-one meetings with Senator Bill Nelson and U.S. Representatives Gus Bilirakis, Alan Grayson, Tom Rooney and Daniel Webster.


During the visits, the Vidal-Velasquez family shared with the Florida legislators their own experiences with having a child with special health care needs, including the severe financial hardship that comes with covering steep co-pays and unrealistic deductibles, and the importance of having a medical home for children with complex and chronic conditions. Together, St. Joseph’s Children’s Hospital and the family asked Congress to support a nationally designated pediatric network that will ensure kids like Jaden can receive life-saving care, regardless of where they live.


“Nearly half of all the patients we treat throughout the hospital are on Medicaid, and a considerable number of these children have medically complex conditions that require specialized care,” said St. Joseph’s Children’s Hospital President Kimberly Guy. “By providing these patients with a medical home, we can deliver significant Medicaid savings while improving their health and long-term medical outcomes.”


St. Joseph’s Children’s Hospital’s Chronic-Complex Clinic has been recognized nationally for its innovative work with medically complex children. Serving as a medical home for patients like Jaden, the specialized clinic provides consistent, accessible and coordinated primary care, resulting in healthier, happier and higher qualities of life for hundreds of children throughout Florida.


To see photos from the family’s trip to Capitol Hill, visit facebook.com/stjosephschildrens.



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