Baby Girl Born With a Giant Neck Tumor Couldn’t Breathe on Her Own — Years Later, She Shared Her Remarkable Story

Lorraine Kelly’s pregnancy had been progressing normally until a routine five-month ultrasound revealed something unexpected.

Doctors noticed a lump on her unborn daughter’s neck. Further examinations at Children’s Hospital of Philadelphia confirmed that baby Emily had a cervical teratoma — a potentially dangerous tumor growing near her airway.

For Lorraine and her husband, Sean, the diagnosis transformed an otherwise ordinary pregnancy into months of uncertainty.

A Tumor Threatening Her First Breath

The medical team discovered that Emily’s tumor was affecting her trachea, the structure responsible for carrying air into her lungs.

Large fetal neck masses can obstruct the airway and interfere with swallowing before birth. They may also cause an abnormal buildup of amniotic fluid.

For Emily, the immediate concern was whether she would be able to breathe when she was delivered.

Her parents turned to specialists at CHOP, who developed a coordinated plan for her birth and subsequent treatment.

A Special Delivery Procedure Offered Hope

Emily was delivered using an ex utero intrapartum treatment procedure, commonly known as EXIT.

This specialized approach allows doctors to establish a baby’s airway while the infant remains connected to the placenta and continues receiving oxygen from the mother.

It gave Emily’s medical team additional time to secure her breathing before completing the delivery.

Following birth, she required extensive medical support as doctors addressed the large tumor and its effects.

Breathing and Eating Were Daily Challenges

Emily needed a tracheostomy to help her breathe and a feeding tube to receive nutrition.

When surgeons removed the tumor, her thyroid gland also had to be removed. As a result, she would require thyroid hormone replacement throughout her life.

Returning home was an emotional milestone, but caring for Emily remained demanding.

Her parents had round-the-clock nursing assistance while they learned to manage her medical equipment.

She Finally Had Her Tracheostomy Removed at Age Four

Emily spent her early childhood receiving specialist care, including speech and occupational therapy.

Because of the tracheostomy, she initially faced significant difficulties speaking.

At four years old, she reached a major milestone when doctors were finally able to remove the breathing tube.

Although some vocal cord paralysis remained, Emily developed the ability to speak well.

Her mother recalled that her voice was slightly deeper, but she continued making progress and enjoying childhood.

From a Fragile Newborn to a University Student

In CHOP’s June 2018 update, Emily was studying Health Information Management at Temple University.

She enjoyed spending time with family and friends and hoped to work at the hospital that had helped save her life.

Although she still required medication because her thyroid had been removed, her need for specialist follow-up had significantly decreased.

Emily’s journey illustrates how treatment for a serious congenital condition can extend far beyond the newborn period.

For her parents, the most meaningful outcome was watching their daughter grow into an independent young woman with ambitions of her own.

Source: Children’s Hospital of Philadelphia — Cervical Teratoma (Giant Neck Mass): Emily’s Story. Originally published June 2009; updated June 2018.