Instead, she left with a diagnosis that would change her life forever: Her baby girl, Ella, would be born with a cleft lip and cleft palate.
Ania was led into a quiet room, and that’s when the doctor explained that the baby she was carrying would be born with a cleft lip and palate. Then came questions and details Ania never expected, including some that were unthinkable. She was stunned as she absorbed all the information coming at her. “The words felt so heavy, so unfamiliar. I never really heard much about cleft conditions before, and suddenly I was drowning in medical terms I didn’t understand,” she said. “I waited so long for this baby – and I was sure I was keeping the pregnancy!”
Walking back to work, she crossed a bridge – one she had crossed countless times before – but that day, it felt different. “It was just a nightmare,” Ania said. “I went home, started Googling and that was the worst thing I could have done. I was a vegetable on the couch – and I’m never like that.” The fear was paralyzing. The unknown, unbearable. And through it all, one thought echoed in Ania’s mind: She had always dreamed of nursing her baby – and now she was terrified she might not be able to.
But after a weekend of tears and silence, something shifted. “I said to myself, ‘She’s going to be OK. I’m going to do everything in my power to make sure she’s happy. I have to be strong for her.’” And with that, Ania began to rise.
She started planning for Ella’s care before she was even born. One of the first clinicians she met was a surgeon at Shriners Children’s. “He put a big smile on my face,” Ania said. “He showed us pictures of beautiful, healthy babies and said, ‘This is what your daughter will look like. She will be a healthy, beautiful and smart girl.'” That was exactly what Ania needed to hear.
When Ella was born, Ania spent the entire night just trying to figure out how to hold Ella so she could breastfeed her. “We were both so tired – her tiny body curled against mine, both of us learning together. But then, finally, we found it. In that moment she didn't want to let go, and neither did I,” Ania said.
You know what, mom? I kind of like my scar.
Ella had her first surgery at Shriners Children’s Boston when she was just 6 months old. “The nurses were amazing. Everyone knew her name. It felt like being with family,” Ania said. “My daughter never felt different.”
Today, Ella is 7 years old – confident, radiant and full of life. But her journey hasn’t been without challenges. When a classmate at school made an unkind comment about her scar, Ella came home hurt and hesitant to return. Ania seized the moment to empower her daughter by showing her pictures of famous people born with cleft lips or palates, proving that this condition did not limit them. “Ella zoomed in, trying to find their scars,” Ania said. “'You know what, Mom? I kind of like my scar.'”
That moment became a turning point – not just for Ella, but for Ania too.
Now, Ania is working alongside Sandra Barrett, BSN, NP, LCC, a care manager at Shriners Children’s Boston, to build a community for cleft families – something she wished she had when Ella was first diagnosed. Together, they are shaping a new Patient Family Advisory Council (PFAC) dedicated to cleft lip and palate patients and their families.
“Back then, I just needed someone to call and say, ‘Hey, I’m going through this too. You’re not alone,’” Ania said. The PFAC cleft lip and palate group is still in its early stages, but it is already creating space for families to connect, share and be heard. “It’s great when they’re newborns and talking about feeding and swallowing,” Sandy said, “but when they get to school age, there are other issues as well.”
For Ania, Ella’s journey has become a story of unexpected strength, deep connection and fierce pride. “If you accept who you are and show others that you’re OK with it, people look at you and think, ‘This is nothing.’ Ella’s condition didn’t make her weaker – it made her stronger,” she said.
And with a mother like Ania by her side, it’s no wonder Ella is already becoming a leader – one scar, one smile and one brave story at a time.
Ella rests on a bed before her cleft lip and palate surgery.
Ella laughs on a lounge chair.
Ella shows off her unicorn-themed face paint.
Ella gives a sleepy grin after an afternoon of swimming.
