Capitol Hill Advocacy Day - ACE Kids Act Pictured clockwise from top left: The Rodriguez family and Dr. Moldenhauer with Senator Pat Toomey, (R-PA), Congressman Lou Barletta (PA-11), Congressman Keith Rothfus (PA-12), and Senator Bob Casey (D-PA). In June, CHOP’s Julie Moldenhauer, MD, medical director of the Garbose Family Special Delivery Unit and attending physician at the Center for Fetal Diagnosis and Treatment (CFDT), and Sarah Guerrieri, CHOP federal affairs manager, joined the Rodriguez family for the Children’s Hospital Association’s Capitol Hill Advocacy Day in Washington, D.C. Three-year-old Miah Rodriguez was diagnosed before birth with the most severe form of spina bifida and the Arnold-Chiari malformation, a potentially life-threatening condition where part of the brain extends into the spinal canal, making her a candidate for fetal surgery.

Miah underwent the in utero surgical procedure at the CFDT to repair the defect and reverse the brain malformation. Now in preschool, Miah continues to face some medical issues but thanks to the surgery, is able to walk independently with the help of orthotics, and has no developmental or cognitive delays.

During the Rodriguez family’s visits with legislators, they advocated for the passage of the Advancing Care for Exceptional Kids Act of 2015 (ACE Kids Act). The ACE Kids Act is a proposal to improve the way care is delivered to America’s children with complex medical conditions who are covered by Medicaid, addressing problems with fragmented care, particularly across state lines, and reducing costs. The Act has garnered wide Congressional support with 215 bipartisan cosponsors in the House and 38 bipartisan cosponsors in the Senate. It also was the topic of a well-attended Energy and Commerce Committee’s Subcommittee on Health hearing this month.

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