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At first, everything seemed fine.
Nina Mayers came into the world on March 16, 2006, at the family’s local hospital in Cleveland, Ohio. Her parents, Lisa and Josh, remember being awestruck by their new baby girl. “She was just as beautiful as her sister Ellie,” Lisa remembers.
Then a nurse tried to take Nina’s temperature. She said she needed to get the baby in better light and took Nina into another room. “We didn’t realize anything was wrong. Nina looked fine,” Josh says.
The couple soon learned that Nina was born with a rare, life-threatening condition called a persistent cloaca. She didn’t have an opening to allow her body to eliminate waste. Nina needed immediate surgery.
“This is not something you read about in the baby books,” Lisa says. “We never would have imagined our child would be born with this kind of condition. Not in our wildest dreams.”
Josh and Lisa are no strangers to the medical world – both their fathers are physicians – and they have a good relationship with the physicians in Cleveland. Yet Nina’s condition was quite rare, so their surgeon recommended they transfer Nina to Cincinnati Children’s Hospital Medical Center. “He said that if she were his child, he would take her there,” Josh remembers.
Within 24 hours of her birth, Nina was flown to Cincinnati Children’s and had the first of several surgeries. The first surgery provided a means to rid her body of waste, crucial to her survival.
Cincinnati Children’s is home to the Alberto Peña, MD, Colorectal Center, the only comprehensive program of its kind in the world. The center was founded by internationally renowned expert Alberto Peña, MD, and includes an interdisciplinary team trained specifically to care for children like Nina.
In less than a year, Nina had six surgeries, countless diagnostic tests, dozens of clinic visits and more road trips to Cincinnati than the family cares to count. Their car logged 6,000 miles, and they spent more than 50 days in Cincinnati.
During those first few months, Josh and Lisa remember their range of emotions, from helplessness to hopefulness, despair to joy, exhaustion to jubilation. They got through it thanks to the love and support of family and friends, their strong faith, and the surgeons and staff at the medical center.
“Cincinnati Children’s is one of the most special places we have ever known,” Lisa says. “There’s a warmth, an energy, a vibe in those buildings unlike anywhere else. It’s clearly a place where patients come first, where healing the patient and the family is a priority, where employees love to come to work every day,” Lisa says.
From the moment the decision was made to transfer Nina to Cincinnati Children’s, the hospital staff leaped into action, coordinating everything from Nina’s air transport to her surgery to the hotel the family would call home during Nina’s stay.
This focus on the whole family gave them the support and the information they needed to make confident decisions about Nina’s course of treatment, and to be emotionally present for both of their daughters throughout the experience.
“Without the support of the doctors, nurses, and staff at Cincinnati Children’s, we can honestly say that Nina wouldn’t be where she is now, and we wouldn’t either. The support we’ve received as parents, from a kind word to a much needed hug to real answers to tough questions, has allowed us to heal and cope and grow,” Lisa says.
Josh and Lisa have chosen to stay connected with Cincinnati Children’s, even as their medical trips for Nina’s check-ups become less frequent. They have shared their story at events benefiting the medical center and raised money for research into new treatments for Nina’s condition.
“Overcoming our grief and pain of having a child with a chronic medical condition became easier as we did more for the hospital – for all the people who have done so much for us,” Josh says. “It’s one of the ways we’ve been able to heal.”
Just 30 years ago, children like Nina would have to live their entire life with tubes and bags attached to them to collect and remove waste. Dr. Peña has made it his life’s mission to help these kids lead normal lives. But there is still work to do.
“There is only one way to get better at treating these kids, and that’s through research,” Josh says. “It is because of those who gave before us that Nina is going to have a normal, happy and healthy life.”
Today Nina is a bright, funny, cheerful, thriving 2-year-old. Like her older sister, she yearns to be a princess. She loves to play dress up, read cupcake cookbooks and hug and kiss her friends.
Nina will need one more surgery and will probably always take daily medication and strictly monitor her diet.
“Nina won’t remember how the nurses on B-5 East took delight in her every smile or how Dr. Peña looks and talks directly to her each and every time they interact,” Lisa says. “She won’t remember (her doctors) looking at her with tubes coming out of everywhere, and telling her that they would celebrate with her at her wedding some day. Nina won’t remember any of that, but they will. We’ll remember all of this each and every day for the rest of our lives.”
“Cincinnati Children’s is a world-class medical community, the finest hospital we have ever seen,” Lisa adds. “Our experience here has nurtured in us a desire to continue supporting Cincinnati Children’s for years to come.”
Nina Mayers, left, doesn’t let her condition stop her from enjoying play time with her big sister Ellie.
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