IE 11 is not supported. For an optimal experience visit our site on another browser.

How one mom's extraordinary love transforms the short lives of hospice babies

They are babies with no families, in foster care with fatal diagnoses. One mom makes it her mission to make sure they know love.
/ Source: TODAY Contributor

Cori Salchert calls the home she shares with her husband, Mark, a “house of hope.” A former perinatal bereavement nurse with eight biological children, Salchert began adopting what she calls “hospice babies” — babies with life-limiting or terminal diagnoses in 2012.

Salchert says these babies come from families who find it difficult to deal with the condition their child was born with. Many step away because they can't bear to witness the end of their child's life.

The first of the Salcherts’ hospice babies, Emmalynn, lived for 50 days before dying while cradled in Cori’s arms. Since then, the Salcherts and their children have made it their mission to care for as many babies that need it, and have had the opportunity to take in other children from the foster care system, as well as support other families in their efforts to adopt children who would otherwise die alone.

Charlie, who has been with the Salchert family since he was an infant, celebrated his fifth birthday in June. Although Charlie's brain damage and life-limiting diagnosis once made this milestone seem impossible, Salchert says they treat each day as a gift, taking Charlie on outings in the sunshine and giving him as many experiences as they can in his remaining time.

The family first told their story to the Sheboygan Press. Here, Cori Salchert tells TODAY's Terri Peters about the road that led her to shelter these sick children in their final days.

Note: This article was originally published on June 20, 2016.

As I sit here at the dining room table, the whirring sound of Charlie’s ventilator and oxygen condenser in the background, I feel I should go back to where this passion for kids began.

Because, overall, a smidge of our story is sad — yes —but if that’s all that’s seen, 95 percent of the joy has been missed.

Never miss a parenting story with the TODAY Parenting newsletter! Sign up here.

When my younger sister, Amie, was an infant, she contracted spinal meningitis. After the high fevers from the infection destroyed quite a bit of her brain function, leaving her mentally and physical handicapped, she went to live in a children’s home for kids who were severely impaired like she was.

When Amie was eleven, she wandered out of an unlocked door at this children’s home and drowned in a pond on a nearby golf course. She was most likely alone and struggling to understand why she couldn’t breathe and there was no one there to help her.

Throughout my life, I struggled with the question, “Where was God when my sister needed Him most?”

In my adult years, I heard a song lyric: “It may be unfulfilled, it may be unrestored, but anything that’s shattered that’s laid before the Lord will not be unredeemed.”

It was this promise that changed my prayers. Instead of asking God over and over why things had been the way they were, I laid down the hurt and disillusion before God and said, “Here, you take this and redeem it.”

And He did — in ways beyond fathoming.

Related: 'Hospice mom' is able to adopt teen just weeks before his death

Salchert's daughter, Emily, 14, holds Charlie.
Salchert's daughter, Emily, holds Charlie.Cori Salchert

Over my years working as a registered nurse, I came into contact with just about every kind of patient. My favorites were hospice care, and working with maternity patients and newborns.

When I started working more in the maternity field, I thought I’d left hospice behind me, until I realized that there were many more than I ever realized who come to the maternity floor to have a baby and instead leave with aching and empty arms because their child died in the womb or shortly after birth.

I found myself drawn to helping these families. Where many obstetrics nurses prefer not to work with dying babies, I saw a need to make the hospital experiences of these women less traumatic — not by fixing what was broken — but by handling them with care instead of rushing out of the room because their grief made me uncomfortable.

Related: To the mothers with an aching heart, you are not alone

Salchert's husband, Mark, assists Charlie.
Salchert's husband, Mark, assists Charlie.Cori Salchert

I later began the Hope After Loss Organization in Sheboygan. It's an organization designed to offer hope to families whose babies had died.

Then, about five years ago, my own health hit a crisis point. I was battling several autoimmune diseases, and required several surgeries to attempt to repair the damage done to my digestive organs. I was suffering, bedridden, unable to work, and again found myself crying out to God, asking, “Well, how in the world are you going to redeem this one?”

But in August of 2012, we received a call asking if we would be willing to take in a two-week-old baby girl who was nameless and had no one to care for her.

The baby’s prognosis was grim, as she was born without the right or left hemisphere of her brain, and doctors said there was no hope for her. I was told that she was in a vegetative state — unable to see or hear, and only responding to painful stimuli.

Taking all of that information in stride, we left to bring Emmalynn home, having been given the privilege to choose a meaningful name for her and allowed the priceless gift of being her family.

Related: What to do and say when someone loses a child

She could have died in the hospital, wrapped in a blanket and set to the side because she was being sustained with a feeding pump. But we brought this beautiful baby home to live, and live she did.

Emmalynn lived more in 50 days than a number of folks do in a lifetime. She had not had a family, and now she was suddenly the youngest sibling of nine. We held her constantly and took her everywhere with us.

There came an evening when I knew Emmalynn was beginning to fade. The whole family was home and got to hold her and kiss her. My husband tucked her close with her little head under his chin and sang to her. Eventually, most of the family began to drift off and head to bed, but my daughter, Charity, and I stayed awake with her.

I was snuggling Emmalynn into my furry, warm bathrobe, holding her on my chest and singing ‘Jesus Loves Me’ to her, when it occurred to me that I had not heard her breathe for a few minutes. I leaned her back to look at her, and saw that this beautiful creature was gone. She’d left this world hearing my heartbeat. She didn’t suffer, she wasn’t in pain, and she most certainly wasn’t alone. It was painful initially. Gradually we were able to see the opportunity to hold her through this life and as she entered the next solely as a gift.

Emmalynn had left her tiny impression on our lives and, while we were grieving her loss, we eventually began to heal and consider taking in another baby.

Salchert and daughter, Mary Elizabeth, 18, kiss Charlie.
Salchert and daughter, Mary Elizabeth, kiss Charlie.Cori Salchert

In October of 2014, we took in four-month-old Charlie. Charlie has a life-limiting diagnosis, but is not necessarily considered terminal. However, children with this type of brain damage typically die by two years of age. Charlie is already on life-support, and has been resuscitated at least ten times in the past year. He now has an altered plan of care, and should he code again, we will not resort to doing compressions and using an AED machine — this time, we will let him go.

I find my own breath catching in my chest at the number of times we’ve helped resuscitate this little guy. I cannot stand the thought of suffocating, and to know that having to draw all of his breaths through a tiny straw is Charlie’s’s difficult for me.

Salchert's daughter, Johanna, 22, helps her bathe Charlie.
Salchert's daughter, Johanna, helps her bathe Charlie.Cori Salchert

As in Emmalynn’s case, we do everything we can to love Charlie, and we take him on adventures with us everywhere we can. We even got approval for a bed large enough for us to snuggle in with him and cuddle him while he is attached to the tubes and machines that keep him alive.

For years, I had wanted to care for babies who had a life-limiting prognosis like Charlie or a terminal diagnosis like Emmalynn. What a gift it is to be a part of these babies’ lives, to have the ability to ease their suffering, to cherish and love them even though they aren’t able to give anything tangible back or even smile in return for our efforts.

Salchert with Charlie.
Salchert with Charlie.Cori Salchert

We invest deeply, and we ache terribly when these kids die, but our hearts are like stained-glass windows. Those windows are made of broken glass which has been forged back together, and those windows are even stronger and more beautiful for having been broken.