Cori Salchert’s House of Hope For Hospice Babies
Listen in to hear about a baby once wheeled into a corner and left to die, who found love in the Salcherts arms, as well as other stories about real children with real needs, and how Cori and Mark Salchert are ensuring every moment of these shortened lives is as special as it can be.A wooden crib stood alone in a quiet corner of the NICU, close to but apart from the rest of the unit. Special lighting beamed from bililights above jaundiced babies. Beeping monitors, worried parents, and dedicated nurses monitored, cuddled, and watched over every precious infant fighting for their lives in the midst of the Neonatal Intensive Care Unit – every precious infant but one.
Alone in that corner, in a modest wooden crib, lay a baby the world seemed to have forgotten.No one held her. A pump fed her. No one even named her, this baby who was destined to die. There was no point in doing any of that. She was born without either hemisphere of her brain. It was a miracle she was alive at all and impossible to alter her outcome. She was unable to communicate or feel anyway, they said. How own mother had left, unable to cope with her daughter’s condition. Given her inevitable outcome, everything was being done to accommodate the process of dying. She was simply a shell, and would not even know the difference – or would she? Cori and Mark Salchert know better. This Wisconsin couple already had their hands full with their eight children. Cori, a former bereavement nurse, had spent significant time in her career on the maternity ward, gradually beginning to focus her energy on helping the parents who found themselves in the nightmare of grief instead of taking a healthy baby home from the hospital. “I will fight anyone who says Hospice doesn’t apply to babies or children in the womb,” she warns. “I’m sorry- a family member has died. Someone has been lost. This family needs care for their grief.”
Cori Salchert realized that while she was powerless to keep these babies alive, she was capable of helping make their deaths a little less tragic.She began HALO, the Hope After A Loss Organization. The focus was on helping families create whatever good memories they possibly could, whether that meant the feeling of holding their baby – even once – before letting it go, or maybe just swinging on a swing in the park before that baby was born to its death, knowing it would not survive outside the womb. It is important for people to have one bright moment to hold on to, or many bright moments, when faced with inescapable tragedy. The challenge is in redefining those bright moments. Thanks to Cori, many grieving parents did just that. Cori learned how to tap into the strength it takes to find that brightness no matter how oppressive the darkness may be. First she did it for others, leading them through their pain. Then she was faced with finding her way through her own life’s challenges. A crippling series of autoimmune diseases ganged up on Cori in 2008. These illnesses became so severe they nearly killed her in 2011. The fire within her dimmed. She’d lost her job and her health. Flames of strength turned to embers as her will dissolved and she begged God to, ‘Kill me already. I don’t want to live like this. I don’t want to be sick… I’m done.” She quit. Tapped out. She wanted to let go. But Mark wouldn’t let her.
“Before we have a funeral,” he told her,” You’re going to try one more time.”With her husband’s love and her family’s hopes and her own stubborn soul, she found the strength to fight a little more. She found new doctors and new diagnoses. Surgeries restored enough of her body so she could return home and live a long life, but irreparable damage left her unable to work. She turned to God again;
“God, you’re going to have to take this mess and redeem it because I don’t see any good coming of this at all,” she prayed.Her life was a mess. Her job had been lost and her health had been lost and her family was in survival mode. She still felt the same compassion and calling to help all those babies no one else would, but she lacked the physical capacity to return to full time work. That, she later realized, is when the door opened for her to do medical foster care at home.
House of HopeBefore she’d said goodbye to her work at the NICU, Cori had left word that she’d be willing to help if a family decided they could not care for their baby with a “fatal fetal anomaly,” or a terminal diagnosis. So it was only a matter of time before her phone rang. The call about the baby born without either brain hemisphere came in the summer of 2012. “Yes,” Cori said, without hesitation. “Let’s do it,” Mark agreed. Hearing that this baby had not even been given a name only stoked their commitment to her. No way, they decided, would this baby be carried out the back door, in a bag, with no one to weep for her. The Salcherts walked into the NICU, past the other babies, straight to the corner with the wooden crib. They saw the tiny, vulnerable infant all by herself.
“Okay,” said Cori,” This is not where you belong. We’re taking you home. “They named her Emmalynn. Cori’s voice brims with tears as she speaks, describing what it had been like to take that baby home and love her for fifty days before she died. “We carried her out the front door. She was chosen and she was cherished. And she has a name and she was known and she is missed and she is still loved.” Emotion may threaten to overwhelm her as she shares these memories, but not enough to slow her down or stop her from making sure Emmalynn is remembered. The love Cori still feels for that baby is impossible to miss as she speaks of the happy moments and memories they created. Emmalyn, once forgotten, lived her short life surrounded with people who loved her and cared for her. She experienced special things like the beach and a concert, and ordinary things, like being taken on errands. “Have baby, have oxygen tank, will travel!” Cori laughs, welcoming the sweet memories even as the painful ones rushed back. Emmalynn died in Cori’s arms, snug up against Cori’s chest, lulled by her heartbeat. She was not alone, and she had been given the gift of experiencing the most from her little life as was humanly possible for Cori and Mark to give to her. Rather than celebrate on her birthday that year, Cori spent the day planning Emmalyn’s funeral. She’d known this would happen – that Emmalyn would die. She understood it and accepted it, and knew she and her family had done the right thing by reaching past Emmalyn’s broken body to touch her soul, so she would know she was loved in this life. But that didn’t mean it didn’t hurt. Emmalyn was no longer in pain, but Cori was. For three weeks Cori struggled, wondering if she would ever be able to do this for another baby in spite of how much it hurt to lose them. Her family had the answer to that. Mark knew this is what Cori was called to do and her kids knew it, too. They all supported her and they’d all played a role in the care of Emmalyn. Now they pledged their support again – even pushed Cori past her own pain to remind her that she was more or less supposed to do this. They all were.
“Mom,” her daughter asked, “What if there’s some kid that needs us and you’re just sitting there with a broken heart?”Those words jolted Cori out of her rut, and she realized, “A broken heart is worth it.” And then the phone rang. Cori and her family have cared for a host of other children since then. They have nurtured and fussed over little babies otherwise destined to live their short lives literally from cradle to grave, with no light in between. More than once they were able to help a child with a grim prognosis recover from those medical afflictions, and find a family to love forever. That is a different kind of pain, to let go of a child and send him into a new life with a new family, but a welcome pain – a pain with purpose. Today, there is in another child in the Salchert’s home. Charlie was not supposed to live past his second birthday but, “he didn’t get the memo,” Cori laughs. He is approaching his third birthday now. The Salcherts officially adopted him, and he will forever be family.
There is no denying the gravity of Charlie’s situation, or pretending he will ever recover.He is significantly brain damaged, and reliant on a ventilator that was put in place before he was in the Salchert’s care. Cori would not necessarily have chosen a ventilator for him but now that it is on, she will not remove it. She isn’t trying to prolong his life but she will not now hasten it by removing the ventilator. At least, not for more than a little while. Charlie is able to be off the ventilator for short periods, long enough for baths or just to hang out a bit. He lives smack dab in the middle of things, the center of attention. Warm baths, lullabies, laughs, and the hustle and bustle of family and friends surrounds him. It’s not Disneyland, Cori points out, but it is life. With her family’s support they make up for missed vacations by savoring everyday moments and making the best of challenging circumstances. Cori readily admits it’s not perfect. There can be bickering and complaining but for the most part, her kids see the value in this way of life, and have never begrudged any of the children the time they could be spending with Cori, instead – which is a good thing because Cori’s time is jam-packed with responsibility. Charlie’s care demands constant vigilance. Cori has even gone so far as to establish a protocol with the first responders who have become regulars at their home, responding to medical emergencies. They have become another extended family, dedicated to help Cori in her work to provide for these children. Charlie has good days and bad days, and Cori never knows which bad day will be the last. She calls it the “Lather, rinse, repeat” cycle, with Charlie coming close to death, seizing and turning blue before recovering one more time. Each time she asks him, “Are we done Buddy?” Have you had enough, she wonders?
But each time he pulls through and Cori loves him just a little harder, willing him to feel it beyond all the barriers his body imposes.Looking at Charlie, Cori is reminded of her own sister. She was just a little girl when her four month old sister contracted spinal meningitis. Amy’s body arched the same way Charlie’s does. She cannot help but think back to her sister’s short life when she is with Charlie. Amy drowned at age 11. Cori carries the pain of that with her. She was too young to help her sister, but she is not too young to help Charlie. And she is committed to doing so, even as she and Mark welcome another boy into their home and their lives. Cori called him Teddy Bear, until it was pointed out to her that this boy is not a baby. He is 13. So she compromised on “TBear,” while smiling a sly smile as she admits since she will be his mom, she will have special leeway to call him Teddy Bear – just sometimes. “I thought I was only here for babies,” Cori says, shaking her head in disbelief at her own decision to deviate from her perceived path. But TBear “looks like a big Charlie,” she gets out as she swallows a new wave of tears. Just last year he was running and playing, before suffering days of seizures. It was discovered he has a terminal, progressive brain condition. He has been bedridden, speechless, and deemed “vegetative,” ever since then. The term “vegetative,” means very little to Cori and Mark in regard to their approach to these children. She is a nurse and understands the medical foundation for these pronouncements, but she cannot agree with the standard protocol for treatment after such prognosis.
“Thanks, but I’m going to take this child home and treat them like the human being that they are and we will take it from there.”Her words, already coming at a furious pace, come now as if on automatic fire, blazing down any notion that these children do not respond to nurturing in their own way. Each child responds in some way, Cori asserts, but not everyone pays enough attention to notice. Emmalyn would fuss sometimes. Mark would pick her up and sing to her, and she would settle down. Charlie makes it clear he doesn’t like his nails clipped. So when she walked into TBear’s room after receiving the same warning about him being unresponsive, she immediately told him, “I am here and I will take care of you. I don’t care if they say it’s meaningless.” Nurses and staff at the hospital TBear was in struggled with their own emotions, having come to care for Charlie over the months, but know he is in excellent care with the Salcherts. Cori arrived before his release date to shower him with a little extra love. He got his first real bath in months, and heard her voice reassuring him he was going home soon, to a family of his own.
Committing to these children is an extraordinary responsibility and requires unwavering determination to push past exhaustion, stress, pain, and even death.Cori Salchert knows she can’t be there for every child like Charlie or the 600,000 children she knows are waiting for families in the foster care system, so she is glad to provide advice to other families considering the same path. “It’s not impossible,” she tells them, “It’s just hard.”
Families interested in learning more about caring for children with these needs can learn more through SafeHaven4Babies , the organization Cori established – in all her free time – as a resource.It’s her way of extending her reach while still focusing on the children in her own care. Cori Salchert regularly updates her facebook page too. She knows each day is precious, even if limited, and she intends to infuse as much life into their days as she can. “If I am going to make the difference between them dying with no life and living until they die I’m good with it.”
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