Born With a Golf-Ball-Sized Tumor on Her Tongue, Baby Clara Couldn’t Close Her Mouth or Eat — Until a Rare Treatment Changed Everything

When Jennifer and Aaron Jensen welcomed their daughter Clara on September 21, 2017, they were completely unprepared for what doctors discovered.

Their newborn baby had a tumor on the back of her tongue approximately the size of a golf ball.

The growth was so large that Clara could not close her mouth or feed normally.

She was immediately transferred to the neonatal intensive care unit at Children’s Mercy Hospital, where specialists began working to protect her breathing and determine what was causing the unusual mass.

A Frightening Discovery at Birth

Clara needed urgent medical support.

Doctors placed a gastrostomy tube, commonly called a G-tube, so she could receive nutrition directly into her stomach.

They also performed a tracheostomy as a precaution because the growing mass threatened to obstruct her airway.

An MRI and biopsy were performed, along with a procedure to reduce the size of her tongue.

Initial results indicated that the growth was malignant, but doctors needed additional testing to identify the exact type of tumor.

A Diagnosis Her Parents Never Expected

Approximately three weeks after the biopsy, Clara’s parents learned that their daughter had an inflammatory myofibroblastic tumor, an exceptionally rare form of cancer.

The conventional treatment would usually involve surgical removal.

However, because Clara’s tumor was located on her tongue, extensive surgery presented major concerns for her future function and development.

Her medical team decided to investigate whether the tumor contained a genetic abnormality that could offer another treatment option.

The Genetic Test That Changed Her Treatment

Molecular testing revealed an abnormality involving the ALK gene.

This finding suggested that a targeted medication called crizotinib might stop the tumor cells from growing.

There was a significant obstacle: the medication was not approved for treating Clara’s particular tumor, and she needed a liquid formulation that could be administered through her feeding tube.

Her oncology team applied for special compassionate-use access.

Approval, which can sometimes take weeks, was granted within days.

Her Mother Returned to Find Something Remarkable

Clara began receiving the targeted medicine through her G-tube.

Around the same time, her siblings became ill, preventing Jennifer from visiting the hospital for approximately a week.

When she finally returned, she immediately noticed that her daughter’s tongue had become visibly smaller.

The medication was working.

Clara continued treatment, and the tumor eventually disappeared.

Eighty Days in Intensive Care — Then a New Beginning

Clara spent 80 days in the neonatal intensive care unit while doctors monitored her response to treatment.

After returning home, her parents continued administering the prescribed medication twice daily for a full year.

According to Children’s Mercy, Clara achieved complete remission without needing additional surgery, radiation or conventional chemotherapy.

She eventually no longer required her tracheostomy or feeding tube.

When the hospital documented her recovery at age two, her latest MRI showed no evidence of the tumor, and her speech development was progressing well.

For Jennifer and Aaron, the little girl who once struggled to close her mouth had finally been given the opportunity to enjoy an ordinary childhood.

Source: Children’s Mercy Hospital — Inflammatory Myofibroblastic Tumor: Clara’s Story.