A Tumor Was Discovered on Her Leg Moments After Birth — Her NICU Nurse Mother Never Imagined Her Own Baby Would Become a Patient

Alex Armstrong had spent her career caring for some of the most vulnerable newborns at Boston Children’s Hospital.

As a neonatal intensive care unit nurse, she understood the medical challenges families could face when a baby arrived with an unexpected condition.

But when she welcomed her twin daughters, Hannah and Sophie, she suddenly found herself experiencing those fears as a mother rather than a healthcare professional.

Although her pregnancy had been healthy and her delivery uncomplicated, doctors noticed an unusual mass on Hannah’s leg immediately after she was born.

An Unexpected Discovery After Delivery

Throughout her pregnancy, Alex had received no prenatal diagnosis suggesting that either of her babies had a serious medical problem.

That changed when the delivery team examined Hannah.

A noticeable growth on the newborn’s leg raised concerns and prompted further medical assessment.

The following day, a member of Boston Children’s surgical team examined the baby and explained that the mass appeared to be a tumor.

For Alex, hearing those words was an overwhelming moment.

She had supported countless parents through frightening medical conversations, but now she was the one trying to understand what would happen to her daughter.

A Rare Tumor Called Infantile Myofibroma

Hannah was diagnosed with infantile myofibroma, an extremely rare type of non-cancerous tumor.

These tumors can develop in the skin, muscles or bones of infants and young children.

Although Hannah’s tumor was benign, it still required specialist assessment and treatment.

She was transferred to Boston Children’s Hospital, where doctors from the Vascular Anomalies team prepared to remove the growth.

One Twin Went Home While the Other Needed Surgery

The experience became particularly difficult because Alex was recovering from childbirth while caring for two newborn daughters.

Hannah remained in the hospital, while Sophie stayed with her mother at the delivery hospital.

On the day Alex and Sophie were discharged, Hannah underwent surgery to remove the tumor.

The operation was performed by Dr. Steven Fishman and the hospital’s Vascular Anomalies team.

Alex trusted the specialists treating her daughter, many of whom were also her colleagues.

Nevertheless, returning home with one baby while the other underwent surgery was emotionally difficult.

Seven Days in the Hospital

Hannah spent approximately one week at Boston Children’s Hospital.

During that time, Alex relied heavily on her fellow NICU nurses to care for her daughter when she could not be at the bedside.

For someone accustomed to being the person providing reassurance, accepting that support was a new experience.

It also gave her a deeper understanding of the emotional and physical challenges faced by parents whose newborns require intensive medical care.

A Happy Baby, With Continued Medical Monitoring

Following surgery, Hannah returned home to her family.

When Alex shared their story in February 2023, her daughter was described as happy and healthy.

She continued receiving follow-up care through the Pediatric Cancer Genetic Risk Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.

Doctors monitored her for any signs of additional tumor growth.

For Alex, the experience changed the way she approached her work.

She understood more deeply that parents navigating a newborn’s medical crisis may need someone to advocate for them, explain unfamiliar information and help them manage the many decisions ahead.

Her daughter’s unexpected diagnosis had given her a perspective she could never have gained from professional training alone.

Source: Boston Children’s Hospital, February 22, 2023 — I’ve Been There, Too: What My Baby’s Tumor Taught Me as a NICU Nurse.