Advocacy, Death & Dying, Life & Living

what if we treated babies like this?

En français ici.


The way we care (or not) for our most vulnerable reflects who we are as people.

Let’s imagine you are a young mother who has just given birth to a frail baby girl, your first child. She’s seven weeks early and terribly sick.

“We’ve done everything we can,” the doctors say after a few days. “We’re so sorry. She has six, maybe eight weeks at most. There’s nothing we can do.”

You are torn to pieces. You want to be as close to her for as long as you can, your baby girl who is dying. You spend your days peering through the glass into the special care unit in which she lies next to others who have no hope. Once each day they let you in so you can touch your baby’s skin, and let her impossibly small fingers try to curl around one of yours. You feel her life force. You pour your love and energy into her like water from a pitcher into a fast-flowing stream. You are exhausted, depleted. But whatever you have left you give to her. You connect with her. You feel it. She feels it too. She is your flesh and blood.

When she is fourteen days old, you arrive to find they have taken her incubator away and she’s shivering with cold. You watch her–a wisp of life alone in a strange world she doesn’t understand–and you are enraged at the injustice. You speak more loudly than you had intended when you finally find a nurse.

“What are you doing? Where is my baby’s incubator? She’s cold!”

“There’s no point wasting money on keeping your baby warm in an incubator,” the nurse is matter of fact. “She’ll be dead in a few weeks anyway, and she doesn’t feel the cold. She doesn’t feel anything. Premature babies don’t have feelings.”

You know that’s not true. You feel her feeling, despite everything. When you hear her cry it rips you apart. You want to help her. You are her mother. But you swallow your protests to protect her from further harm. One day you notice her diaper is wet; it’s not the first time. It has soaked through to the dirty blanket on which she lies. You can’t change her yourself; it’s against the rules. If you step out of line they may not allow you to see your baby at all, even through the looking glass. So you find a nurse.

“My baby needs to be changed,” you say. “She’s wet and uncomfortable.”

“Oh,” the nurse smiles, “We just changed her four hours ago. She’s not scheduled to be changed for another four hours. And trust me, we know what’s best for her.”

But you can see they don’t. No, they don’t know what’s best at all. They only know what appears efficient, what is easy, what has always been done, or what someone has told them to do. It’s all about procedures, not people.

“But she’s wet now,” you can’t help yourself. “She needs to be changed now, not four hours from now.”

The nurse’s face becomes a mask. “We have a schedule. That’s how we do things.”

“What about a blanket? May I have a blanket for her?” You plead. You beg. She’s your baby.

“I’m sorry, we don’t have extra blankets,” the nurse says, her voice rising, her face tighter. “And she can’t tell the difference between clean and dirty or hot and cold anyway. No need to spend good money cleaning blankets for soon-to-be-dead babies.”

Your heart is in pieces. Your hands are tied. One day in the third week, half way to her deadline, you find your daughter limp as a rag doll. You think she might be dead. You rush to find a nurse.

“What happened to my baby?” Your voice quivers; you are on the edge of an abyss.

“Oh,” the nurse says, “She was crying too loud and disturbing the other dying babies. We gave her something to keep her quiet.”

Keep her quiet! Your mind screams. Keep her quiet? You want to shake that nurse until her bones rattle. Your words tumble out like pick up sticks.

“She’s a little baby who is dying. She’s cold and wet. She’s lying on a dirty blanket. Put her back in an incubator. Give her something clean and soft to lie on. Change her diaper so she’s dry and comfortable. She’ll stop crying lickety split.”

“I’m in charge of these soon-to-be-dead babies,” the nurse loses it. “I’ve seen more dying and dead babies than you can count, and I know what I’m talking about.”

“You don’t know my baby,” your voice is suddenly as calm and quiet as death itself. “My baby lived inside me seven months, one week, six hours, thirty-two minutes, forty-eight seconds and a million heartbeats. We shared my body, my blood, my breath. She is part of me. She is me. We are one and the same. I know her. I have seen her in my dreams. And I see her here now. You never felt her stir inside you. You didn’t birth her. You don’t know when she’s in pain.”

The nurse is unmoved. Two days later, your little girl dies. But not from the disease she lived with. From the cold, the wet and the neglect.

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16 thoughts on “what if we treated babies like this?”

  1. Powerful! As a mother to a a child that lived only a few hours and a daughter to a mother that suffered in a home. All I can say is make your loved ones life as peaceful and uncomplicated as possible. Learn patience and breathe! You can’t stop the process but you can help yourself get tty through it. ❤


  2. Well written example of the cold hard “truth” many of us face or see–which doesn’t NEED to be. As an activist for animal welfare I was greatly disturbed to become exposed to these practices disrespecting our elderly-I fight for MORE for animals , some Feel these action’s are acceptable. Death need not be undignified.


  3. We are so fortunate that my sweet Momma is truly loved and cared for when we can’t be there. Everyday she is here with me is a blessing. When I read these types of things it enrages me, like Ghost Boy, wow that story killed me. Striving to always be on high alert to any discomforts Momma might have. Susan, your words have helped me so much through this journey. Thank you.


    1. Thanks Kat, and nice to hear from you again. I believe that when someone has dementia, the people around them need to be extra vigilant and to listen carefully to what they express either verbally or through their behaviours to better understand what their needs are.

      As you read in the Ghost Boy story, Martin’s parents thought they were doing the right thing by bringing him to the “country home.” Had he not miraculously recovered his ability to communicate, they never would have known about the abuse he suffered. So it is with many others, particularly elderly people who live with dementia and are vulnerable because of the challenges they also often face in communicating.

      I believe that many care workers genuinely care about people, but many don’t also have the proper training, knowledge, and skills to do the job correctly. Also, I think the system in North America and many other places is severely broken and doesn’t permit care workers who really DO care to do the kind of job they would like to.

      We have a long way to go to fix the problems inherent in the system, and as systems and people generally prefer the status quo regardless of how flawed it may be, it’s not going to be an easy row to hoe.


  4. Heartwrenching! Can’t stop the tears…does the battle ever end with our LOs truly being cared for properly?
    I grow weary…my husband was dx with PMR, and has severe osteoarthritis, neck, shoulders, hips and low back, severely arthritic and is in great pain. Been on multiple pain-killers for over 7 years and last year they felt he really doesn’t need pain meds, because he doesn’t ask for pain pills.

    I finally got one home to understand and did some better, the last two, now it is back to square one and I get nowhere…

    I only want him cleaned, dried, fed well, well hydrated and pain-free, as comfortable as possible, safe…it seems that most don’t understand it. But as I see it, this is the only way, the humane way. Have we lost our humanity?


  5. Wow, very powerful and moving. Gosh lets hope with knowledge and understanding care for the elderly living with dementia will improve to a stage in life we can all be proud off. With knowledge and time comes change.


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