Baby Girl Born With a Giant Tumor Growing From Her Mouth Survives After Doctors Feared She Would Never Live

When Lesly was just 12 weeks pregnant with her first child, doctors discovered an enormous tumor growing from her unborn daughter’s mouth.

The diagnosis brought devastating news. Her doctors in California feared that the baby would not survive, leaving the young mother facing an unimaginable decision.

But Lesly was not ready to give up on her daughter, Lilly.

Determined to explore every possibility, she returned to her home state of New Jersey and sought a second opinion at Children’s Hospital of Philadelphia (CHOP).

A Tumor That Threatened Her Baby’s First Breath

Specialists at CHOP examined Lilly’s condition and identified a major danger: the enormous mass could obstruct her airway during delivery.

Even if she survived pregnancy, Lilly might be unable to breathe independently when she was born.

The medical team developed a plan to monitor the growth every two weeks and prepare for a highly specialized delivery.

For Lesly, finding a team willing to consider treatment gave her renewed hope.

A Special Delivery Designed to Save Her Life

Doctors planned an ex utero intrapartum treatment procedure, commonly known as EXIT.

Unlike a conventional delivery, this approach allows specialists to establish a baby’s airway while the infant remains connected to the placenta and continues receiving oxygen from the mother.

The procedure was particularly important for Lilly because the mass near her mouth could make breathing immediately after birth extremely difficult.

Her delivery required careful coordination between maternal-fetal medicine specialists, surgeons and other members of the medical team.

Her Journey Continued Long After Birth

Surviving delivery was only the beginning.

Lilly subsequently underwent 10 surgeries to remove the remaining mass and reconstruct affected parts of her face.

Her recovery also involved ongoing medical support, including a tracheostomy and a feeding tube.

Each procedure represented another stage in helping her breathe, eat and develop.

Through it all, her mother continued supporting her daughter’s recovery.

From a Frightening Prognosis to an Active Childhood

In CHOP’s January 2018 update, Lilly was four years old and attending full-day prekindergarten.

She had recently had her tracheostomy tube removed and a fistula closed.

Although she still used a feeding tube and received speech therapy for developmental delays, her progress was remarkable.

She could eat by mouth, walk, run and enjoy ballet. Her mother also described her love of coloring, swimming, movies and roller coasters.

The little girl once expected to face overwhelming difficulties at birth was now experiencing many of the everyday joys of childhood.

A Mother’s Decision That Changed Everything

Lilly’s medical journey also inspired Lesly to pursue a career in nursing.

After witnessing the care her daughter received, she wanted to help other families facing similarly frightening circumstances.

Her daughter’s story is a reminder that a difficult prenatal diagnosis can require complex decisions, specialist evaluation and carefully coordinated medical care.

For Lesly, the decision to seek another medical opinion gave Lilly an opportunity that once seemed impossible.

Source: Children’s Hospital of Philadelphia — Lesly’s Leap of Faith. Originally published October 2016; updated January 2018.