Miami—Miami Children's Hospital patient Crystal Rodriguez will join more than 25 children from around the country in Washington, D.C., as part of the National Association of Children’s Hospitals and Related Institutions (NACHRI) Family Advocacy Day, July 25-26. At a time when Congress is thinking largely about budget cuts, Crystal and her parents will meet with Florida lawmakers in Capitol Hill to advocate for children’s hospitals.

Crystal was born with tetralogy of fallot, a rare condition that changes the direction of blood flow in the heart, and affects only five in 10,000 babies. She underwent open-heart surgery twice before she turned 3. Dr. Redmond Burke, Crystal’s heart surgeon, helped calm the family’s fears from the very beginning.

 “When we sat down with Dr. Burke, his confidence really put us at ease,” said Oscar Rodriguez, Crystal’s father. “We got a medical miracle.”

In January of this year, Crystal was able to benefit from the very latest in medical technology, thanks to Miami Children’s. She received a replacement heart valve implanted through a catheter line that spared her another open-heart surgery. Dr. Evan Zahn, Chief of Cardiology, was instrumental in getting the Medtronic Melody™ Transcatheter Pulmonary Valve and Ensemble™ Transcatheter Delivery System approved by the FDA. This promises great advantages for children and adults with valve disorders, who typically require replacement valves every ten years or so. The implantable valve has the potential to spare them many open-heart surgeries.

Thanks to these interventions, Crystal is an active 7-year-old who loves to sing, dance and help her mom with her two younger sisters, Grace and Rachel.

“Before, Crystal had a hard time running and jumping, she would have to stop to catch her breath,” Oscar said. “Now she can do anything. We are really excited to have this opportunity to help other children receive the same great care that we did.”

“I feel really good about the hospital.” Crystal said.  “They make you laugh and feel confident that everything will be okay. They make me feel happy.” As Crystal and her family head to Washington, they may be affecting her future in more than one way. “I want to be a doctor,” Crystal said. Budget cuts may limit the number of residency programs, which in turn will limit the number of doctors available.

This Homestead family will go to Washington, D.C., enjoy a tour of the Capitol, visits with members of congress and share their story. With this full schedule, the Rodriguez family will advocate for Miami Children's Hospital, the hospital that gave them a “medical miracle. 
 

Founded in 1950 by Variety Clubs International, Miami Children's Hospital® is South Florida’s only licensed specialty hospital exclusively for children, with more than 650 attending physicians and over 130 pediatric sub-specialists. The 289-bed hospital is renowned for excellence in all aspects of pediatric medicine with several specialty programs ranked among the best in the nation in 2008, 2009 and 2010 by U.S.News & World Report. The hospital is also home to the largest pediatric teaching program in the southeastern United States and has been designated an American Nurses Credentialing Center (ANCC) Magnet facility, the nursing profession’s most prestigious institutional honor.
 

The National Association of Children’s Hospitals – N.A.C.H. – is the public policy affiliate of NACHRI.  N.A.C.H. is a trade organization of 141 children’s hospitals and supports children’s hospitals in addressing public policy issues that affect their ability to fulfill their missions to serve children and their families.  N.A.C.H. fulfills its mission and vision through federal advocacy, collaboration and communication designed to strengthen the ability of children’s hospitals and health systems to influence public policy makers, understand federal and state policy issues, advance access and quality of health care for all children, and sustain financially their missions of clinical care, education, research and advocacy.