A Family's Story of Care and Support After Facing a Trisomy 18 Diagnosis

For Johanna and William Henneberg, VHC Health has always been a special place. William was born at the hospital, and all five of their children—Helen, Daniel, Samuel, Andrew, and Jack—were delivered here as well.

“Some people have an aversion to hospitals,” said Johanna. “I walk in and feel like it’s a warm embrace.”

But when the Henneberg family was expecting their fourth child, Andrew, their connection to VHC Health’s Charlotte S. Benjamin Center for Women’s Health would deepen.

A Trisomy 18 Diagnosis Met with Compassion 

While pregnant with Andrew, Johanna and William learned something was different during their 25-week anatomy scan.

“Several organ systems in the fetus were affected.”,” said Dr. Myriam Ferzli, a Maternal-Fetal Medicine specialist with the Charlotte S. Benjamin Center for Women's Health. “There were unexpected findings showing significant concerns.”

The genetic testing results confirmed a diagnosis of Trisomy 18, a rare chromosomal condition that is not compatible with long-term life.

Working closely with genetic counselor Sydney Richards, MGC, CGC, Dr. Ferzli explained the possibilities with clarity and care.

“We met with the family and learned about what was most important to them,” said Sydney Richards, MGC, CGC, genetic counselor at the Charlotte S. Benjamin Center for Women’s Health. “We take the time to let families process what they’re hearing. Our role is to walk beside them, not rush them, as they navigate some of the hardest moments of their lives.”

“It’s never an easy part of our job, but we do it as graciously as we can,” said Dr. Ferzli. “Every family has different values, and we aim to understand and support them.”

Embracing Each Moment of Andrew's Life 

The diagnosis was unexpected for the Henneberg family.

“They didn’t sugarcoat it,” said Johanna. “But that didn’t mean Andrew’s life was any less important. They supported us with truth, honesty, and compassion.”

The family was determined to make each moment matter. Rather than feeling dread before appointments at VHC Health, the family often looked forward to them.

“We would jump for joy at his movements,” said William. “And Dr. Ferzli would come in smiling, asking, ‘How’s Andrew?’ She rejoiced with us in the wins—every appointment where his heart was still beating was a win.”

Johanna went into labor and delivered Andrew at VHC Health. They stayed at the hospital for two days, then brought Andrew home. For nine days, the Hennebergs cherished every moment with Andrew.

“Towards the end, we could see that his body was getting tired,” Johanna said. “I held him, leaned my head back, and he passed away in my arms.”

The Power of Empathy in Healthcare at VHC Health 

The family recalls the way VHC Health providers walked beside them—not just as clinicians, but as people.

“You can't train empathy. You can't train people to enter into your story and walk alongside you,” Johanna said. “There was just a real relationship that I think is so special to VHC Health. It comes from the character of the people that are there.”

Watch the Henneberg Family's Story