Born Without a Bone in His Left Leg, Baby Tommy’s Parents Faced a Heartbreaking Decision About His Future

At their routine 20-week pregnancy ultrasound, MaryKay and her husband received news they never expected.

Doctors noticed that their unborn baby appeared to be missing a bone in his lower left leg.

The suspected diagnosis was fibular hemimelia, a rare congenital limb difference that affects the development of the fibula, the smaller of the two bones in the lower leg.

For the Chicago couple, what should have been an exciting milestone became the beginning of a difficult search for answers.

A Rare Condition Confirmed at Birth

When Tommy was born in 2010, doctors confirmed that his left fibula was absent.

His ankle had also developed differently, causing his small foot to turn toward one side.

MaryKay and her husband began researching their son’s condition and consulting specialists throughout Chicago.

They even traveled to Florida seeking additional medical advice.

The family wanted to understand what Tommy’s future might look like and which treatment could offer him the greatest independence.

A Decision No Parent Wants to Make

Eventually, the family began considering amputation followed by the use of a prosthetic leg.

For MaryKay, the possibility was emotionally overwhelming.

She was being asked to make a permanent decision for her baby, knowing that he was too young to understand or participate in it.

An orthopedic surgeon recommended that the family visit Shriners Children’s Chicago and consult pediatric orthopedic surgeon Dr. Jeffrey Ackman.

There, the medical team explained the available treatment options and discussed Tommy’s long-term mobility.

Preparing for Surgery While He Was Still a Baby

After careful consideration, Tommy’s parents decided that amputation and a prosthetic limb offered the best path for their son’s circumstances.

Dr. Ackman explained that when amputation is selected for young children with similar conditions, surgeons typically aim to perform it around the age when a child begins pulling themselves up to stand.

This timing can help a child begin learning to walk with a prosthesis.

Tommy underwent surgery while still very young.

His mother later recalled how difficult it was to hand her baby over to the surgical team, knowing he would return with a below-knee amputation.

She also remembered the reassurance she received from the hospital staff throughout the experience.

Learning to Stand With His New Leg

Following surgery, Tommy began adapting to life with a prosthetic leg.

Photographs published by Shriners Children’s show him as a small child, including an image of him learning to stand with assistance after treatment.

As he grew, his prosthetic care continued to support his changing needs and increasingly active lifestyle.

His family encouraged him to explore childhood activities without allowing his limb difference to define who he was.

The Little Boy Who Eventually Learned to Ride a Bike

Years later, Tommy had become an energetic child who loved spending time outdoors.

There was one activity that remained especially challenging: riding a bicycle with his customized prosthetic leg.

For years, he struggled to master it, even as his friends rode around him.

During the pandemic, however, Tommy finally learned to ride.

His family celebrated the achievement, affectionately jokingly comparing him to cyclist Lance Armstrong.

When Shriners Children’s published his story in May 2022, Tommy’s journey had become a reminder that children with congenital limb differences can develop active, fulfilling lives with appropriate medical care and family support.

Source: Shriners Children’s Chicago, May 5, 2022 — Fibular Hemimelia: Tommy’s Story.