Baby Girl Born With a Massive Tumor Making Up One-Third of Her Body Weight

When Eleanor and Matt learned they were expecting their first child, they imagined the day they would finally hold their baby girl in their arms. But halfway through the pregnancy, a routine ultrasound revealed something neither parent could have prepared for.

Their unborn daughter, Emily, had developed a large tumor at the base of her spine. Doctors identified it as a sacrococcygeal teratoma, a rare growth that can become life-threatening before a baby is even born.

Months later, Emily would enter the world carrying a tumor that accounted for approximately one-third of her entire birth weight. Her fight to survive would begin immediately.

A Devastating Discovery at 20 Weeks

Eleanor, known to her family as El, was 20 weeks pregnant when an ultrasound revealed the abnormal mass growing near her baby’s tailbone.

The initial news was frightening. The couple were told their daughter faced serious risks, and they were encouraged to seek specialized fetal care.

Determined to understand every possible treatment option, Eleanor and Matt traveled to Children’s Hospital of Philadelphia, where a multidisciplinary team at the Center for Fetal Diagnosis and Treatment evaluated their unborn baby.

There, specialists explained the condition and developed a plan to monitor Emily closely throughout the remainder of the pregnancy.

Weekly appointments would help doctors track the tumor’s growth and identify any signs that Emily’s heart or circulation was struggling. If her condition deteriorated, fetal surgery was among the options being considered.

Her parents hoped she could remain safely in the womb for as long as possible.

At 34 Weeks, Something Suddenly Went Wrong

For weeks, Eleanor attended regular checkups, holding on to the hope that her baby could reach a safer stage of pregnancy before delivery.

But at 34 weeks, she woke up with a troubling feeling that something was wrong.

She and Matt immediately rushed to Children’s Hospital of Philadelphia.

Doctors discovered that Emily’s tumor had hemorrhaged, causing significant blood loss. The situation was now an emergency, and the medical team determined that the baby needed to be delivered immediately.

Emily was born that day weighing 6 pounds and 12 ounces, approximately 3.06 kilograms.

Shockingly, the tumor attached to her tiny body accounted for about one-third of that weight.

Before doctors could stabilize her, Emily required three full blood transfusions. The bleeding area was urgently closed, and specialists prepared for another critical procedure.

Major Surgery Just One Day After Birth

While most newborns spend their first full day being cuddled and welcomed by family, Emily was being prepared for an operation to remove the enormous growth.

The day after she was born, surgeons performed the definitive procedure to remove the sacrococcygeal teratoma.

The operation addressed the mass that had threatened her life during pregnancy and caused the dangerous hemorrhage shortly before delivery.

But even after the tumor was removed, Emily’s journey was far from over.

Because she had arrived six weeks early and had already endured major medical treatment, she faced additional challenges, including breathing difficulties and developmental concerns.

She was transferred to the hospital’s Newborn/Infant Intensive Care Unit, where her parents began another anxious period of waiting.

Thirty-Four Days in Intensive Care

Emily spent the next 34 days in intensive care, gradually recovering while her parents learned how to look after a baby with complex medical needs.

For Eleanor, becoming a mother had been very different from what she had imagined.

Instead of taking her first baby straight home, she learned how to change diapers, take Emily’s temperature and bathe her under the guidance of neonatal nurses.

Those small responsibilities became deeply meaningful. They allowed her to take part in caring for her daughter despite the uncertainty surrounding Emily’s health.

Eventually, Emily was strong enough to leave the hospital.

She went home with an apnea monitor to track her breathing, which she needed for approximately five months.

Her developmental progress also required time and support. She did not begin walking until she was around 18 months old, but she gradually caught up with other children her age.

From a Life-Threatening Tumor to a Childhood Full of Joy

Emily continued receiving follow-up care so specialists could monitor her surgical site and check for any recurrence of the tumor.

After approximately a year and a half, she graduated from the hospital’s neonatal follow-up program, although she continued attending periodic appointments.

In the hospital’s published family update, Emily was six years old and enjoying an active childhood.

She loved dancing, swimming, gymnastics, singing and attending school. She had also become a big sister to two younger siblings, Matt and Lucy.

For her father, the contrast between the enormous tumor Emily once carried and the energetic little girl she had become was remarkable.

For Eleanor, every birthday brought back memories of the day they nearly lost their daughter.

Her first thought was to celebrate Emily’s birthday. Her second was gratitude that their family had found the medical care she needed.

Emily’s story is not simply about an extraordinary operation. It is about a little girl who faced a life-threatening condition before she could take her first breath, and the parents who eventually got to watch her run, dance, learn and grow.

Source: Children’s Hospital of Philadelphia (CHOP), “Sacrococcygeal Teratoma (SCT) Surgery: Emily’s Story.” Additional reference: Philadelphia Eagles, CHOP MVP patient profile.