Grow Inspiring: Natalia’s Story

The staff at the hospital where Natalia Rodriguez Sabala was born hadn’t seen a patient like her in seven years. She was born with cloacal exstrophy, also known as OEIS syndrome: Her bladder and portions of her large intestine were on the outside of her belly, and her bladder was split open into two halves. She didn’t have a vaginal opening, anus or belly button.

“It was intimidating,” says mom Stephany. “I remember thinking, How are we going to take care of her? How can we make her life better?”

Stephany and husband Miguel knew that for their daughter to have a healthy, full life, she needed the right experts by her side. So after surgery in Florida failed to keep Natalia’s bladder inside her body, they decided to do whatever it took. They picked up and moved from Florida to Connecticut, close to Connecticut Children’s — the only health system in the state 100% dedicated to children, with an entire program for Natalia’s condition.

From the first visit, says Stephany, “I knew it would be okay.”

Urology patient Natalia looks out the window while wearing a yellow dress

 
 

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“I have never seen a doctor so dedicated to a patient”

Children with Natalia’s rare birth defect can live happy and full lives, but they need the right care — including some of the most difficult surgeries in pediatric urology. Connecticut Children’s is leading the way: The Division of Urology leads a multi-institutional Reconstructive Urology Program devoted to performing these complicated reconstructions, directed by pediatric urologist Courtney Rowe, MD.

“I was lucky to learn about care for bladder and cloacal exstrophy from some of the greatest surgeons in the world,” says Dr. Rowe. “I set out to build our Connecticut collaboration to give children the same care I would want for my own daughters.”

That was exactly how Natalia’s family experienced it.

“Dr. Rowe is the most amazing doctor in the world,” says Stephany. “She’s taken in Natalia as if she were her own daughter. She’s been there as a friend, as a person to ask advice to, to call with any questions, just to make sure everything’s okay. I have never seen a doctor so dedicated to a patient.”

 

> Related: Late-night fever? Weekend ear ache? Connecticut Children’s urgent care is here

“I knew my daughter was in the best hands”

After months of careful planning, Natalia had reconstruction surgery last winter with Dr. Rowe and multiple other surgeons, including urologist Anne G. Dudley, MD, and orthopedic surgeon Mark C. Lee, MD. The team worked together to reposition Natalia’s bladder on the inside of her belly, construct new urethral and vaginal openings, cut her hip bones and bring them together, and give her a brand-new belly button.

From start to finish, the procedure took 12 hours. Stephany and Miguel followed along every step of the way on the EASE app.

“It’s kind of breathtaking,” says Stephany. “That’s a long time not to see your kid. That’s a long time for your kid to be under anesthesia. But Connecticut Children’s is literally the best at communication. And I knew my daughter was in the best hands ever.”

Courtney Rowe, MD, with patient Natalia

> Related: Care is right around the corner! Find a Connecticut Children’s location near you

“The biggest inspiration”

“Natalia has fought through so many battles,” says Stephany. “I’ve seen a lot of tough things, and I’ve never seen a kid go through what she’s gone through. Natalia’s the toughest person I know.”

She fought for her life at birth. She fought through incomplete reconstruction surgery in Florida. She fought through other health complications due to her condition. But now, thanks to the successful reconstruction at Connecticut Children’s, Natalia gets to be much like any other 2-year-old, active and chatty and climbing everything in sight. Out at the playground, other parents often comment on her sweet personality. They never guess she has a rare health condition.

Natalia and her parents pictured with Courtney Rowe, MD

When Natalia’s older, she may be a candidate for reconstructive surgery on her colon, eliminating the need for the colostomy bag she wears. In the meantime, she’ll continue receiving care from Connecticut Children’s Divisions of Gastroenterology, General Surgery, Nephrology, Neurosurgery, Orthopedics and Urology, an integrated care team who will be keeping an eye on her as she grows – and cheering her on as she embraces all the possibilities in a long and healthy life.

Stephany often refers to Natalia as “the biggest inspiration.” After all, it was Natalia who motivated their small family to pick up and move cross-country. It’s Natalia who never fails to make the people around her smile, even on difficult days.

And it’s Natalia who, just by being herself, can show other kids with health challenges that brighter days are possible.

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