Family opens home to fragile, dying kids

SHEBOYGAN, Wis. — Cori Salchert sits on a hospital bed parked in the middle of her living room, stroking the peach fuzz on top of the head of her 1-year-old son, newly adopted.

Charlie is at ease in his mother's arms, drifting off to the hum of his ventilator and other equipment in the room. But his mother, who adopted him knowing that he is expected to die soon, shakes her head at the surreal sight.

"The crazy thing is that kiddos with a lot of equipment were something that I never wanted to do," she said. "I was scared to death that I would accidentally hurt them."

The mom of eight biological children used to work as a registered nurse and perinatal bereavement specialist with the Sheboygan-based Hope After Loss Organization, a group that helps families cope with the loss of a pregnancy or newborn child. If parents were too overwhelmed with emotion to hold their baby whose pulse was waning, Salchert would cradle the child so "no one had to die alone."

Mom battles school over how terminally ill son might die

Some parents whose children had a life-limiting diagnosis had to give up guardianship because of finances or inability to cope emotionally. Many of these babies spend their short lives in a bassinet in the corner of a hospital, perhaps never even being held if they are tube fed and do not need to be removed from the crib, she said.

"There was no judgment on my part that the parents should just be able to deal with the circumstances," Salchert said. "But I thought, 'Wow, I would really like to take those kiddos and care for them.' "

But she and her husband, Mark, worked full time while caring for their eight children, so the idea was set aside.

About five years ago, Cori Salchert was struck with an autoimmune disorder that caused gastrointestinal distress and required multiple surgeries that led to further complications. She said she couldn't continue work and felt hopeless.

"My prayer at that time was asking how God could possibly use this for good," she said. Her husband suggested that was the time to try to foster what Cori Salchert calls "hospice babies" through the treatment foster care program at Children's Hospital of Wisconsin, which matches families with children who have significant to severe behavioral or medical challenges.

In August 2012, the Salcherts brought Emmalynn home to Sheboygan, about 60 miles north of Milwaukee. She did not have the left or right hemispheres of her brain, only the brain stem.

She lived 50 days.

Emmalynn passed away tucked into Cori Salchert's fuzzy green robe “like a kangaroo” while foster mother and daughter sat alone at the kitchen table one night.

"Emmalynn lived more in 50 days than most people do in a lifetime," her foster mom said.

Baby born missing most of brain proves doctors wrong

The Salcherts' next foster child was Jayden, who was able to overcome his medical challenges to become a thriving toddler. A cousin of the boy's biological parents ultimately adopted him.

With Emmalynn's death and Jayden leaving, the Salcherts were heartbroken. Cori Salchert recalls turning to her husband and saying she was done with treatment foster care, but he said this is what she was meant to do.

The Salcherts believe in the importance of involving their children these decisions about foster care, so they rounded up the gang.

"Are you all ready to do this again?" Cori Salchert asked. She assured them it was OK if the answer were "No."

But their children all said, "Yes!"

Mary Elisabeth, one of the Salcherts' daughters, even piped up: "Mom, what if some kid really needs us and you're just sitting here with a broken heart?"

Amy Basting, a foster care recruitment specialist for Children’s Hospital of Wisconsin, said that while she deeply admires the Salcherts’ care for Emmalynn and Charlie, the majority of children in the hospital’s treatment foster care program aren't terminally ill. The hospital has locations in Milwaukee and Neenah, Wis.

“The situation where terminally ill children enter into treatment foster care is more of an exception than the norm. That is probably what makes the Salcherts so remarkable,” Basting said. “Treatment foster care often provides homes for children with a wide range of medical needs, but the majority do not have life-ending conditions.”

After the Salcherts talked with their children, called their social worker and were matched with Charlie a week later. The family was grateful for the hospitality of the Ronald McDonald House in Milwaukee while they learned how to care for him.

Charlie has hypoxic ischemic brain encephalopathy and has neurological impairments as a result of a lack of oxygen. He is dependent on a tracheostomy, ventilator, feeding tube and other equipment.

Survivor brings hope to littlest AIDS victims

The first time Cori Salchert had to start working with Charlie's tubes, she broke down sobbing over his crib in front of the nurse who was training her, overwhelmed that the little boy would not be able to breathe and could suffer if she hesitated or made one wrong move.

"But, God told me, 'We're going to kick this fear in the butt,' " she said. "It's OK to be afraid, but never let fear cripple your life."

Charlie's care quickly became a part of the Salcherts' routine. The Salcherts adopted him Dec. 18.

But while Charlie has brought the Salcherts much joy, his new mom is quick to point out that the family is not perfect and she isn't "supermom."

Her children have cried when she was forced to split time between hospital visits and birthday parties because Charlie was having a rough patch. She holds up a pair of her teenage son's boots, showing how the insides are tattered and must be digging into his heel.

She only just discovered it.

Like most families, the Salcherts still are improving communication with each other about their everyday needs. But overall, the happy moments come on the heels of a setback for Charlie.

Charlie’s older sisters love to climb into his bed and cuddle or watch movies. The family enjoys taking walks together in the summer and invested in a stylish pair of shades for Charlie to wear in the sun.

Duchess Kate spends wedding anniversary at kids' hospice

In addition, the Sheboygan Fire Department made Charlie an honorary fireman, and the Salcherts’ church, Crossroads Community Church in Sheboygan, is always there to support them.

Charlie “really brings out the nobler parts of a community” when others rally around him, Mark Salchert said.

But the Salcherts don't ignore the reality of Charlie’s life-limiting diagnosis.

“He will die. There’s no changing that,” Cori Salchert said, brushing away a tear. “But we can make a difference in how he lives, and the difference for Charlie is that he will be loved before he dies.”

The Salcherts have relied on their faith for strength and comfort in raising Charlie and past foster children. Cori Salchert said she believes that Charlie will be able to “eat without a tube in heaven, and it will be the very best food.”

The family already has spoken with funeral directors and plans to send off balloons at his burial to “symbolize the setting free of Charlie’s soul” from the confines of his medical challenges.

“God is love, and he loves this little boy, and he loves us to love him," Mark Salchert said when asked why his family has chosen to care for children in danger of dying soon. "Charlie is truly an amazing individual. He’s made us richer — more alive, in a sense.”

His wife strokes Charlie’s tiny hand while cradling the fragile child in her arms.

“These children need nurses, but the overarching thing is they need moms,” she said. “Too many people never do anything because they can’t do everything and can’t save everyone.

"For me, even though I can’t help every child I’m happy to make a difference in the lives of a few."

Follow Leah Ulatowski on Twitter: @Leah_Bekah