One local family is taking their story to Capitol Hill to deliver an important message to their members of Congress. Nationwide Children’s Hospital patient, Patrick Bibbee, 2 (Columbus, 43235), and his family will join nearly 30 other child patients and their families to meet with members of Congress and share their personal health experiences as part of the 2013 Children’s Hospital Association’s Family Advocacy Day, taking place June 19-20 in Washington, D.C.
Scientific advances have made it more feasible for children to survive extreme prematurity. Patrick was one of these children. A twin born at just 23 weeks gestation, Patrick weighed 1 pound, 7 ounces and was not even 12 inches long. He suffered nearly every complication a baby born that early can suffer including a grade 1 brain bleed, sepsis, open PDA, BPD (lung disease), kidney reflux, numerous blood transfusions, among other complications. At just six days of age, he and his sister Paige were diagnosed with necrotizing enterocolitis (NEC) and were transferred to Nationwide Children’s for emergency surgery. Sadly, Paige did not survive. Patrick fought on and underwent an additional eight surgeries most notably for ROP (retinopathy of prematurity) in both eyes, a detached retina and additional intestinal procedures. During all of this, Patrick’s father Shannon, a Captain in the Army Reserves, was deployed to Iraq.
After a six month stay in the neonatal intensive care unit (NICU) at Nationwide Children’s, the Bibbee family is grateful to have had the hospital in their backyard having access to tremendous health care. The family thanks the physicians, nurses and staff of Nationwide Children’s for providing care to Patrick, helping to make him the happy and healthy 2-year-old he is today who loves books, music and playing with his little brother, Dylan, 1.
“Shannon, Patrick, Dylan and I look forward to traveling to Washington, D.C. to represent all patient families of Nationwide Children’s Hospital for Family Advocacy Day,” said Amanda Bibbee, Patrick’s mother. “We’ll be advocating not only for preemies like Patrick who survived and thrived, but also for tiny angels like Paige who fought a courageous, admirable battle that not even the largest of giants could have won.”
“Because of Shannon being called to active duty during Patrick’s entire NICU stay, we were covered by the military’s TRICARE insurance plan,” said Amanda. “We will be speaking to members of Congress about TRICARE’s importance to children like Patrick and making it an even stronger program for children as well as the need for health coverage for all children. We will also be asking for more support for the NIH and other pediatric research to help save the Paige’s of the future.”
Steve Allen, MD, chief executive officer of Nationwide Children’s, will be joining the Bibbee family on Capitol Hill.
“Ensuring that children of military and non-military families have timely access to well-trained pediatricians and pediatric specialists should be a priority for Congress together with pediatric research,” said Dr. Allen. “This is the best investment our nation’s leaders can make in the future of children’s hospitals and the patient families we serve.”
About the Children’s Hospital Association
The Children’s Hospital Association advances child health through innovation in the quality, cost and delivery of care. Representing more than 220 children’s hospitals, the Association is the voice of children’s hospitals nationally. The Association advances public policy enabling hospitals to better serve children, and is the premier resource for pediatric data and analytics driving improved clinical and operational performance of member hospitals.
For more information on Family Advocacy Day, visit www.childrenshospitals.net, or follow the families on Facebook at http://www.facebook.com/speaknowforkids or Twitter, @speaknowforkids, #FAD13.