Born With a Mysteriously Swollen Foot, Baby Drew’s Parents Spent 16 Months Searching for Answers

When Kerri and Don Rossi welcomed their daughter Drew, they noticed something unusual almost immediately.

The newborn’s left foot was noticeably swollen.

At first, her parents wondered whether she had injured it during delivery. But as time passed, the swelling did not disappear.

Instead, it began spreading to other parts of her body, leaving her family increasingly concerned about what was happening to their little girl.

A Swollen Foot With No Clear Explanation

Drew’s parents initially sought answers at their local hospital, but they were unable to obtain a definitive diagnosis.

They then arranged an appointment with a vascular anomalies specialist in New York.

Even after further evaluations, the cause of their daughter’s swelling remained unclear.

Additional blood tests brought more stress without resolving the mystery.

Meanwhile, Drew’s symptoms continued to progress.

Her Mother Began Suspecting a Rare Condition

Kerri, who had a medical background, began researching her daughter’s symptoms herself.

She suspected Drew might have lymphedema, a condition in which the lymphatic system does not properly transport fluid away from body tissues.

When lymphatic fluid accumulates, it can cause persistent swelling, commonly affecting the arms or legs.

The condition can also increase the risk of skin infections and create challenges with movement and everyday activities.

Determined to find a specialist who understood the disorder, Kerri eventually contacted Boston Children’s Hospital.

Finally, a Diagnosis at 16 Months Old

When Drew was 16 months old, her family traveled to Boston to meet Dr. Arin Greene, director of the hospital’s Lymphedema Program.

According to her mother, the specialist recognized the likely condition almost immediately after entering the examination room.

Further testing confirmed that Drew had primary lymphedema.

This form of lymphedema can be present from birth and does not necessarily have an identifiable underlying cause.

For Kerri and Don, finally receiving a diagnosis brought relief after more than a year of uncertainty.

But they also learned that their daughter’s condition would require lifelong management.

A Daily Compression Sock Became Part of Her Childhood

There is no established cure for primary lymphedema, but treatment can help control swelling and reduce complications.

Drew began using a compression garment on her left leg to help manage fluid accumulation.

She also attended occupational therapy for lymphatic drainage massage and continued receiving annual follow-up care from Dr. Greene.

As she grew older, Drew became increasingly comfortable explaining her condition to other people.

Instead of hiding her compression sock, she learned to tell others why she needed to wear it.

From a Frightening Diagnosis to an Active Five-Year-Old

When Boston Children’s Hospital shared her story in July 2022, Drew was five years old.

She enjoyed swimming, hiking, playing soccer and spending time with her older sister.

She had also attended a camp for children with lymphedema, where she could meet others managing similar medical challenges.

Her parents became advocates for greater awareness, speaking at medical symposiums and discussing possible participation in research into the genetic causes of the condition.

Their goal was to help other families avoid the prolonged uncertainty they had experienced during Drew’s first 16 months.

For the little girl whose medical journey began with one unusually swollen foot, learning to manage her condition became another part of growing up.

Source: Boston Children’s Hospital, July 20, 2022 — Advocating for Herself: Drew Takes Lymphedema in Stride.