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Washington, D.C., trip for family of premature twins 'amazing experience'

Northwest Columbus woman speaks to congressmen about health care programs

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CHRIS PARKER/THISWEEKNEWS
Amanda Bibbee and her children, Patrick and Dylan, recently met with members of Congress as part of a contingent from Nationwide Children's Hospital for Family Advocacy Day.
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By ThisWeek Community News  • 

Amanda Bibbee could write a book, and believes maybe she should.

After all, the Northwest Side woman has been through both sides of what it's like to give birth to premature twins, the sheer joy of watching one of them survive and thrive, and the absolute, heart-wrenching agony of watching one of them die.

"We've seen the best of prematurity with regards to our son and the worst of prematurity with regards to our daughter," Bibbee said last week, just back from a trip to Las Vegas with her parents and two children that came right on the heels of a visit to Capitol Hill with 2-year-old Patrick as part of the 2013 Children's Hospital Association Family Advocacy Day.

"We want to give hope to other families going through the same thing," she said.

Bibbee said she would fervently hope other families don't have to go through the same thing.

That is why she accepted the invitation from officials at Nationwide Children's Hospital where Patrick and his sister, Paige, were treated after being born following only 23 weeks of gestation.

The people who make decisions about the health care system needed to hear stories like she was able to tell nine Ohio congressman and both U.S. Senators during the June 19-20 Family Advocacy Day, Bibbee said.

"It's the best way for us to honor our daughter's memory, really, and also to honor Patrick's fighting spirit," Bibbee said.

The child needed a lot of fighting spirit.

"(Patrick) suffered nearly every complication a baby born that early can suffer ...," according to an announcement from Nationwide Children's Hospital on the eve of the family's departure for Washington, D.C.

Bibbee, 30, met her 36-year-old husband, Shannon, at Ohio University while she was a student studying public relations.

Mr. Bibbee had already graduated, but was working in Athens. They were married seven years ago, and initially settled in Cincinnati, but came to Columbus when Mr. Bibbee received a promotion in his civilian job with an industrial supply company.

He is also serving in the Army Reserves and is on active duty.

Bibbee was deployed in Iraq when his wife went into labor way, way in advance of anything the couple could have expected.

"Never in my mind did I think I would lose one of them," Mrs. Bibbee said. "I knew there was a chance they could be born early, although never as early as they were.

"It just seems so surreal," she said.

"It's something you would never wish on anyone. It's a horrible, horrible thing to go through."

At six days old, both twins were diagnosed with necrotizing enterocolitis, which the website of the U.S. National Library of Medicine describes as the "... death of intestinal tissue."

Patrick and Paige were transferred to Nationwide Children's hospital. Doctors there were able to save Patrick, but not Paige.

As Bibbee was saying goodbye to her daughter, doctors were 10 feet away, operating on Patrick.

"I think I was in a fog," she recalled. "It was just unimaginable."

A portion of Patrick's bowel was removed.

"But that wasn't the end of it," Bibbee said.

Not by a long shot.

Eight additional surgeries -- to the baby's stomach and heart and eyes -- followed.

"Every single day it seemed like there was another obstacle in his way," Bibbee said. "I always told people I could never breathe a sigh of relief."

She said she can today.

Bibbee said someone looking at Patrick would not have any idea what he went through as an infant, or that he spent six months in the neonatal intensive care unit.

Today he loves books, music and playing with his 1-year-old little brother, Dylan, according to the hospital announcement.

"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," Dr. Steven Allen, chief executive officer of Nationwide Children's Hospital, said in the announcement prior to Family Advocacy Day.

"This is the best investment our nation's leaders can make in the future of children's hospitals and the patient families we serve," Allen said.

"It was an amazing experience," Bibbee said, "Patrick just loving running down the big hallways in the Capitol."

The Children's Hospital Association created "baseball cards" for all 30 of the child patients who participated with their name and photo on the front and a description of their condition on the back, Bibbee said.

Patrick got a big kick out of handing those to members of Congress, Bibbee said.

She said after the trip to Washington, she, Patrick and Dylan drove across the country with her parents to Las Vegas for a vacation. Mr. Bibbee was able to spend a weekend with them.

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