Thanks to Alexandra’s House, no family need grieve alone

Patti Lewis knows the pain and loneliness of grieving for an infant.

She lived through it with her niece, Alexandra.

Alex was born Dec. 12, 1994, with a rare genetic condition that ended her life after 45 days.

Forty-five days and nights that changed Lewis’ life.

Lewis and her family were afraid to sleep during Alex’s short life. They worried that Alex might die in the night, alone.

And alone is how the family felt.

Isolated, angry, scared. All the emotions that a dying baby brings, but without anyone who seemed to understand.

Lewis watched as Alex struggled to breathe. For hours she rocked Alex in her arms late at night, weeping because “I couldn’t buy her anything, or feed her anything. … All I could do was love her.”

Lewis identified a hole in medical and social service support for families with terminally ill babies.

She knew before Alex died that she wanted to do something more with her life. She knew that her family would have found comfort had they met someone who had lived through such an experience, someone who could have listened or just shared stories about other families that had endured the same loss.

More than anything, she knows that it is families who give meaning to these babies’ short lives.

“(This work) was definitely a calling,” she says.

Lewis has been at the forefront of bereavement care for dying infants and their families. Today dozens of perinatal hospice care programs are operating across the country.

For more than a decade Lewis worked as a cardiology nurse, first at St. Luke’s Hospital, then at KU Medical Center. She shunned working with sick babies.

“It was always too sad for me,” she says, grinning at the irony.

In 1997, after learning how to put together such a program, she opened Alexandra’s House, a nonprofit organization that is not affiliated with any hospital or doctor’s office. It’s supported entirely by donations from the community, and all its services to families are free.

The work consumes her, demanding that she be available day and night, facing all kinds of emotions from parents and other family members struggling with grief and loss.

She prays that others with the same calling will eventually join her, to share the workload. Volunteers are also always appreciated, she says.

To her, helping these families is a sacred task.

She comforts and counsels moms-to-be as if she were their own mother, but also their nurse/counselor/girlfriend.

She attends doctor appointments with them. She holds a parent’s hand if they need it during an ultrasound. She prays with them. Visits them in the hospital, calls them as the birth date approaches, often just to listen. Helps them write a birth plan. Helps them plan the funeral.

Families can live at Alexandra’s House the last month if their homes are too far from their hospital.

Sometimes the upstairs loft at the house becomes a chapel for a visitation or funeral. Alexandra’s House will even pay for a baby’s headstone.

Lewis follows through with families for three years, connecting them with other mothers and fathers who suffered such losses, making sure grief support and counseling are in place for the family — and members of the extended family — who may be struggling.

Her calm spirit and empathy soothe hurting families. With Lewis, they do not have to grieve alone.

That grief can be as strong as contractions, Lewis says. “I tell them that if this were a gaping wound, they would be given medicine to take the pain away. Nothing can take this pain away when it comes.”

Each mother who suffers this loss will have moments when she cries out, overcome with everything. The fathers suffer, too.

“They all do,” Lewis says.

But denying the sadness causes problems later, sometimes many years later, she’s learned.

She also knows that grieving now helps families for the rest of their lives.

“Families can be healed. I know it, I’ve seen it. Avoiding the pain won’t make it go away.”

She has watched the transformation in lives. “I’ve seen the best in humanity.”