“They told me that she wasn’t going to survive,” recalls Lesly. “They told me that if I kept the baby I was putting my life at risk. They basically declared her dead in a sense.”
Devastated, the 23-year-old New Jersey native decided to move back home in search of a second opinion and a ray of hope.
“I took a leap of faith,” she recalls. That leap landed her at Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment for an evaluation.
A plan of action
The Center’s team gave Lesly the hope she so desperately sought. Knowing the large tumor (a type of giant neck mass) would hinder Lilly’s ability to breathe on her own after birth, the team devised a plan to monitor the tumor’s growth every two weeks, and then deliver the baby via the ex utero intrapartum treatment (EXIT) procedure.
In an EXIT procedure, medical teams would open the uterus almost as they would in a C-section, but before cutting the umbilical cord, they would perform surgery on Lilly to remove a large portion of the tumor. This technique would make sure Lilly continued to receive oxygen and nutrients from Lesly while the team worked to create an airway. Once enough of the tumor was removed to establish an airway, they would cut the umbilical cord and complete the delivery.
At 26 weeks, Lesly moved from her mother’s home in Northern New Jersey, almost two hours away from CHOP, to a hotel less than an hour away. Then, at around 30 weeks or so, when checkups at the Center increased to once a week, Lesly moved to the Ronald McDonald House in Camden, N.J., just a 15-minute drive away from the hospital. She stayed there for the duration of the pregnancy.
Documenting Lilly’s arrival
At one checkup, Lesly was approached about being part of a documentary PBS was filming on the Center. She ultimately became one of four awe-inspiring stories told in “TWICE BORN: Stories from the Special Delivery Unit,” a three-part series that aired on PBS in the spring of 2015. It follows four families as they face the prenatal diagnosis of birth defects and make decisions about life-changing procedures.
“They filmed me, but I was so concentrated on what was going on it didn’t feel like they were there,” says Lesly. “I’m glad I did it.”
Less than a week after that checkup, Lilly was born via EXIT procedure in the Garbose Family Special Delivery Unit (SDU), the first unit of its kind in the world. Lilly needed a tracheostomy to help her breathe at birth, but the procedure went well. Lesly was thrilled to finally meet her baby girl.
“It was amazing. I don’t think I could have a baby anywhere else. Even though it was a traumatic, hard situation, they made it better for me, where I didn’t feel that way. I think that really helped.” — Lesly, about her delivery in the SDU
An ongoing adventure
Lilly’s recovery was a long one. But for a little girl who wasn’t expected to survive, every step is a breakthrough moment.
She spent two months in the Newborn/Infant Intensive Care Unit and three months in the Pediatric Intensive Care Unit. Since birth, she has undergone 10 surgeries to remove the rest of the mass and help reconstruct her face.
Lilly is now 4, attending full-day pre-K, and doing amazing, says her mom. She recently had her trach removed and had a fistula closed. She still has a G-tube and has some speech delays which she sees a therapist for, but other than that, Lilly is just like any other kid her age. She eats by mouth, walks, runs and does ballet, and she loves to color, swim, watch movies and ride roller coasters.
“She’s adventurous,” says her mom. “She loves everything. She’s a very fun little girl. I can’t believe it’s only been four years. When I see her and I see all the things that she does, it’s unbelievable.”
Lesly is now studying to be a nurse, inspired by those who provided care during her pregnancy and Lilly’s recovery. As she pursues this new dream of her own, she makes sure to instill in Lilly the belief that the sky’s the limit.
“I have a lot of hope in her and I think that she can do anything she sets her mind to,” says Lesly. “I tell her that all the time and I treat her like a normal child, and that has helped her as well. There is nothing that she cannot do.”
Originally published October 2016
Updated January 2018