Published on in CHOP News
In recognition of Birth Defects Awareness Month, we recently traveled to Washington, D.C., to advocate and raise awareness about birth defects, fetal surgery, military families and more.
N. Scott Adzick, MD , Surgeon-in-Chief of Children's Hospital of Philadelphia (CHOP), joined the Kanes — an inspirational military and fetal surgery family with an amazing story to tell — to spread the word about these issues.
Dr. Adzick met with many legislators, including Congressman Ryan Costello, Congressman Dwight Evans, Senator Bob Casey, Senator Mike Rounds, as well as staff from the office of Congressman Frank LoBiondo.
The trip also included a briefing for Congressional staff where Dr. Adzick, Dr. Philip Bayliss from Lancaster General Health, and the Kane family shared their experiences to educate the audience on these important topics.
One family's experience speaks for many others
Amanda and David Kane, like so many of the families we care for, were told mid-way through their pregnancy that something was not right. The Navy family soon learned that their unborn son had spina bifida. They were quickly referred to CHOP, where they were evaluated at the Center for Fetal Diagnosis & Treatment (CFDT). 37 days later, Amanda and their son, Andrew, underwent fetal surgery. At the briefing in Washington, the Kanes shared their journey from diagnosis and referral to CHOP, to their fetal surgery and ongoing care, as well as an update on how their son, Andrew, is doing today.
For the Kanes, and many other families who receive prenatal diagnoses, the ability to access specialty care right away is critical to ensure the best possible outcome.
All families, including military families, deserve access to the best treatment options available for their children. Recognizing this, CHOP worked with Congressman Tom MacArthur, Senator Rounds and other members of Congress on a new law to help ensure that pregnant military women whose babies are diagnosed with birth defects can access specialists at the CFDT and other centers around the country in a timely manner. During our trip to D.C., we talked about the importance of this new requirement and the help and hope it will bring to military families.
Check out some of the photos from this exciting day!