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They Said Her Unborn Baby Wouldn't Live But She Didn't Listen

Photograph by John Rotan

Lesly Leiva was going to school to earn a communications speech degree and working two jobs in California when she found out she was pregnant. She was 10 weeks into the pregnancy. Since she only had a few weeks left of school, she carried on with her routine while she got used to the idea and began preparing for the future. The baby's father was not interested in the baby, and wouldn't be a part of their future.

But two weeks later, she received devastating news: Her baby had a fast-growing tumor coming out of her mouth. Her obstetrician advised her to terminate the pregnancy. She was told the baby would die at birth, if not sooner, and that she would be putting herself at risk if she tried to continue the pregnancy.

Lesly's mind reeled. "The beginning was the worst part of the whole pregnancy," she said. "They gave me no hope. Just... 'you have this issue, and we can't fix it.' "

But Lesly rejected the idea. She began ignoring the follow-up calls from her doctor's office. "I didn't ignore the fact that the baby had a tumor," Lesly said. "But I ignored the fact that terminating my pregnancy and that my baby was going to die were my only two choices."

Instead, she finished her classes, packed her bags, left everything behind, and went home to her family in Rhode Island. Once home, she went to a local clinic and told them her diagnosis and that she was high-risk. They sent her to a specialist. Her condition was so rare that no one had ever seen anything like it. So they called the Children's Hospital of Philadelphia (CHOP) that same day.

The hospital, known for its Center for Fetal Diagnosis and Treatment and its Special Delivery Unit, has pioneered groundbreaking procedures that allow doctors to operate on fetuses.

Before long, Lesly went to CHOP to undergo tests — such as an MRI and ultrasounds — to determine if she was a good candidate for their program. Because her condition was so rare, they knew right away she was eligible.

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Photograph by Rodgers Dameron

"They gave me hope," Lesly said. "I knew everything was going to be fine. I could feel it. I just had that faith." Her positive attitude was strengthened by the pregnancy itself because aside from the tumor, she felt everything was normal. Lesly experienced no morning sickness, swelling or any other negative side effects that many expectant mothers go through.

The doctors monitored Lesly's pregnancy carefully. She went in for checkups every two weeks until she reached 30 weeks, and then moved to Philadelphia to be close to the hospital. At first she stayed in a hotel. But after several days, she moved into a Ronald McDonald House.

"No one really knows what they can or can't handle until they're faced with it," Lesly said. She gratefully acknowledges her family for being invaluable throughout the entire situation. Her mother and father — who are from El Salvador and Honduras respectively — supported her every step of the way, as did her two sisters.

Lesly delivered her baby girl, Lilly, at 36 weeks. Her skilled doctors performed a partial delivery, at first, so that they could remove the tumor from Lilly's mouth before separating her completely from her mother.

"Seeing her was my best moment," Lesly said. "It is definitely life-changing. All the negatives you've heard immediately go away. All I thought about was my daughter."

In addition to the tumor, Lilly was born without a palate so she has required additional treatments and still does. Lilly has had to undergo plastic surgery to help reshape her facial features to achieve a more balanced appearance. Both the tumor and its removal affected portions of her mouth area. But despite her medical issues, Lilly is a normal 18-month-old toddler who is already walking, trying to run, and even trying to talk.

The positive experience with CHOP has deeply affected Lesly, who went back to school a year ago. This time, however, she's studying to become a nurse because she so admires the nurses who cared for her and Lilly in the hospital. She said she's come to the conclusion that "every nurse is amazing."

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You can watch Lesly and Lilly's story Tuesday nights on the PBS' documentary series "TWICE BORN: Stories From the Special Delivery Unit" or watch it online.

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