A long chain of courage: Farrell infant overcoming effects of spina bifida could come home this week

Apr. 19—PITTSBURGH — The staff at UPMC Children's Hospital of Pittsburgh has a program called Beads of Courage, which recognizes the youngest and tiniest patients for their treatment milestones.

Patients get beads for each day they are in the hospital, each time they're stuck with needles for either tests or injections, surgeries and dressing changes.

Bodhi Ward is only 5 months old, but his Beads of Courage chain covers a lot of ground.

"His is like, it is super long," said Bodhi's mother, Ashley Boulanger. "It's heavy and it is super long. You don't realize how much your kid is going through until you look at the chart and put the beads together.

For Bodhi's entire life, "home" has been a hospital room — either at UPMC Magee-Women's Hospital, where he was born Nov. 17, or Children's Hospital. That could change this week, when he and his parents return home to Farrell.

Bodhi was born prematurely, and that wasn't his first or even his biggest challenge. He was diagnosed in utero with spina bifida, a condition where the fetus' spine fails to develop properly.

Boulanger, 32, said doctors had told her about her son's condition before she went into labor at 32 weeks, well short of the typical 40 weeks gestation. But with the spina bifida, doctors could not wait.

"If I had gone any further into labor, Bodhi might have bled out and died," she said.

Bodhi's first procedure — one of his first Beads of Courage — was spinal surgery the day he was born. Doctors inserted a shunt to treat hydrocephalus — a build up of fluid in the cranium.

Medical personnel discovered that Bodhi's vocal cords are paralyzed, which necessitated the insertion of a tracheostomy tube for breathing and a gastrostomy tube for feeding.

Boulanger, who has worked as a nurse's aide and in health-care coding, brought some experience into the process of raising a son with special medical needs, so she's more comfortable than many parents in her position with treatment jargon.

From Bodhi's birth at UPMC Magee-Women's Hospital to his treatment at Children's, Boulanger said her son has received "phenomenal" care.

"I couldn't ask for anybody better," she said. "If he just breathed the wrong way, they were running to make sure he was OK."

But even for a medical professional, it's different to have her own child lying in a hospital bed with tubes and monitors. Boulanger said she and Bodhi's father, Thomas Ward, have accepted their new reality.

"When you don't have a choice, you have to be strong," she said.

Bodhi could return home as soon as this week. Part of the delay was from the requirement that he receive 24-hour nursing care to ensure that trained medical care could respond immediately to even a minor emergency.

Another requirement for Bodhi's homecoming was notifying Farrell Fire Department that he was on a tracheostomy tube so emergency responders could react to a power interruption.

Boulanger called spina bifida a "snowflake diagnosis" — no two people experience it the same. But she sees reasons for hope.

Club foot and leg paralysis are common among spina bifida patients, but Bodhi appears to have avoided both of those complications. His hands and feet developed perfectly, and he has a full range of motion in his legs.

Boulanger said Bodhi's vocal cord paralysis could reverse, so the tracheostomy tube "might not be forever."

"You have to take it day by day," she said. "We don't know if he's going to be able to walk. We don't know if he's going to be able to control his bowels."

When Bodhi returns home, he stands to have a large welcoming committee — led by his two older sisters, Aubree Contera, 3, and Sofia Contera, 6 — who "just adore him and can't wait for him to come home."

He also has a bedroom waiting for him. It's decorated in an nature theme, a nod to both parents, who enjoy the outdoors.

Thomas is an avid archery hunter and he's looking forward to getting his son out to a lake with a pole in his hand.

"I just can't wait to take him outside and see the look on his face," Thomas said.