BABY BORN WITH A MASSIVE TUMOR MAKING UP ONE-THIRD OF HER BODY WEIGHT UNDERGOES LIFE-SAVING SURGERY AT JUST ONE DAY OLD

When Eleanor and Matt learned they were expecting their first baby, they imagined all the ordinary moments that would come with becoming parents.

But at their 20-week ultrasound, their excitement turned to fear.

Doctors discovered that their unborn daughter, Emily, had a large tumor growing from the base of her spine. The diagnosis was sacrococcygeal teratoma, a rare congenital tumor that can become life-threatening before a baby is even born.

Her parents were initially told that their daughter faced a deeply uncertain chance of survival.

A Frightening Discovery Halfway Through Pregnancy

After receiving the diagnosis, Eleanor and Matt traveled to Children’s Hospital of Philadelphia (CHOP) for a specialist evaluation.

There, a multidisciplinary fetal care team developed a plan to monitor Emily closely throughout the remainder of the pregnancy.

The goal was to allow her to grow safely in the womb for as long as possible, while preparing for immediate intervention if the tumor became dangerous.

Weekly examinations were arranged to monitor the growth and Emily’s heart function.

At 34 Weeks, Everything Suddenly Changed

One day, when Eleanor was 34 weeks pregnant, she woke with a feeling that something was wrong.

She and Matt rushed to CHOP, where doctors discovered that Emily’s tumor had hemorrhaged, causing significant blood loss.

There was no longer time to wait.

Emily needed to be delivered immediately.

When she was born, she weighed 6 pounds and 12 ounces. The enormous tumor accounted for approximately one-third of that weight.

Three Blood Transfusions Before Her First Major Surgery

Emily’s medical team worked urgently to stabilize her.

She required three full blood transfusions, and doctors immediately controlled the bleeding from the tumor.

Once she was stable enough, surgeons prepared for the next critical step.

At just one day old, Emily underwent an operation to remove the massive growth.

For her parents, the beginning of their daughter’s life had become a sequence of frightening medical emergencies.

Thirty-Four Days in Intensive Care

Although the tumor was successfully removed, Emily still faced complications associated with her premature birth and recovery.

She experienced breathing difficulties and required ongoing medical support.

Emily spent 34 days in CHOP’s Newborn/Infant Intensive Care Unit.

During that time, nurses helped Eleanor learn how to care for her first baby, from bathing and changing diapers to monitoring her temperature.

For Eleanor, being able to participate in those ordinary tasks brought a sense of connection during an otherwise overwhelming experience.

Six Years Later, Her Family Shares an Extraordinary Update

After leaving the hospital, Emily initially needed a breathing monitor at home.

She also experienced some developmental delays, but gradually caught up with other children.

At approximately 18 months old, she began walking and completed CHOP’s neonatal follow-up program.

She continued attending medical appointments to monitor her surgical recovery and check for tumor recurrence.

By the time CHOP shared her story at age six, Emily was enjoying dancing, swimming, gymnastics and school.

She had also become a big sister to two younger siblings.

For her parents, every birthday carried special meaning. They remembered how close they had come to losing her before she had even entered the world.

Emily’s journey remains a remarkable example of specialized fetal care, emergency newborn surgery and a family’s determination through an uncertain beginning.

Source: Children’s Hospital of Philadelphia, “Sacrococcygeal Teratoma (SCT) Surgery: Emily’s Story.”