Saturday, August 7, 2010


Okay, some of you may have read it. I know Annette commented on it. I'm referring to that blog posting written by a young woman who thinks us babylost mothers are not being respectful by posting photos of our dead babies and can't understand why we create 'online shrines' to their memory. I'm not going to post the link to it because I know it upset a lot of babylost bloggers.

However, I bet that woman's opinions are not all that original. I bet there are lots of people out there who would not understand the desire we have to connect with one another over our lost children. They would not understand the need to 'cling' as they say, to our babies. They wonder why we don't 'move on', 'try again' and wonder if 'continuing to focus' on the loss is really in our best interests. I've been thinking a lot over the past little while about how other people see us babylost moms.

Perhaps it's because I'm about to go back to work with sick children, including babies. Maybe not the same type of sick children I was used to to looking after, as these ones will weigh more than a honey dew melon, but still, not the type of children that make it into theme park ads, or commercials for frosted cereal. And really, those are the types of children people are familiar with. Children that run, jump, play, pretend. Children that don't have needles stuck in them, whose youthful bodies are not giving out on them, children who don't know what a blood transfusion or a lumbar puncture is. Babies who eat with their mouths, and not via a tube through a hole in their stomach.

Those who do not live in the land of the sick and the lost see baby and childhood death as a very foreign concept. One that does not get brought up in polite society. Even the Foundation website (where you go to donate money) of the hospital I work at glosses over the struggles children must endure to 'overcome' their illnesses. There is NO mention that sometimes no matter how good the care, no matter how much money, time and effort or prayer is put in, babies and children still die. There is no mention on this website that these babies and children have undergone more invasive tests, surgeries and medical procedures and spent more time in the hospital than your average 90 year old. That they have been brought back from the brink many, many times. Maybe more times than they should have. Death and illness are portrayed as the enemy, not a natural event that will happen to us all...some of us sooner than others.

To avoid thinking about baby or child death, people like to shut it away, not see it, pretend it doesn't exist...that it is too "precious" to view or talk about. That it should only be mentioned in the most reverential tones at a funeral and even then, done in euphemisms and innuendo. Soften it, smooth it out, gloss over it.

I remember, over a year ago, when my husband and our two best friends were on our European vacation and I was describing to them the recent events of a shift I had worked prior to going away. I had arrived at work to find that my patient had already died, and all that was left to do was to wash and dress the baby, finish up some paperwork, and then take him down to the morgue. I would have to wait awhile though because his parents were still holding him. So I waited. I checked in on them, and waited some more. Then, when they were ready, I took their son and did his bath and dressed him in the outfit they had chosen. I packed up his foot and hand molds, and his other special mementos. I showed his parents the folder of information that is given to the babylost. Got assurances from them that they had a ride home. Then they said goodbye to their son. Mom cried. Dad held her. Afterwards I wrapped him up in baby blankets, nicely positioned his arms and head so it would look natural for his funeral, put the identification tags on him, wrapped his little body in a baby sized body bag and took him down to the morgue.

As I was describing this, my friend was looking at me in horror. He said "I could never do that...I would be a mess". Now I've had many versions of this comment over the years I worked in the NICU. I appreciate that people were trying to tell me that I was 'strong' and 'brave' for what I faced in the NICU...but I always felt a little like it was a backhanded compliment. More like what they were really saying was "I'm much more sensitive and caring than you are. I could never watch babies die and then go back to my regular activities", or more likely "I'm glad it's you and not me". Really, there were very very few people that could listen to a full account of what I did on a regular basis. They did not like to hear about it. They did not like to face baby sickness and death. Most people pretend it does not happen...and they like it that way.

We were out last night with these same friends for my husband's birthday dinner. They had their 6 month old with them. They were telling us about a joke that involved labour, midwives and musing about a funny things to say during the delivery of their next kid. I'm sitting there smiling and going along with the joke...but I just couldn't stop the following from running through my head: "Wow. They assume that their next delivery will be peppered with funny moments. Stressful ones, painful ones, too...but also a celebration...a cause for joy. They are assuming they will have a midwife deliver their baby and not a high risk OB, and that it will be a vaginal delivery. And...they are already assuming there will be another child".

I no longer make assumptions about these things. I hope for them. I wish for them. But I do not assume. The only reference point I have is my own labour and delivery, and it was not full of joy, or cause for celebration, and definitely had no funny moments. It was painful in away that did not end when the baby was delivered, the muscles healed and the uterus shrunk back to normal.

So, I'm thinking all these thoughts about my own baby and baby death.

Then I see this on Esty:
It's a post mortem photograph of a baby named Willard who has died at age 4 days in the summer of 1911 of 'innard spasms' (whatever that is). This photo is selling for $60 US ($63.32 CAN).

And, at first glance, I am creeped out.

Here I am, immersed every day in baby death and I cannot fathom why someone would want to have a 99 year old photo of a baby who they never knew and had no relation to (for over $60 no less). But then I think, Emily, who are you to judge? Why be creeped out? That was someone's loved little baby and wouldn't you be impressed if one day someone thought Aidan was so cute and beautiful that they would pay $60 for a picture of him? Hell, I would save the one perfect photo we have of him in a fire over any other possession, even over his urn. So, who am I to judge an antique enthusiast who finds joy in collecting old photos. Some day all our photos will be old.

So, while I cannot and do not agree with the website I mentioned at the beginning of this post or its view of us babylost, I also can understand why the writer would feel that way. Why she wouldn't get a blog devoted to a lost baby, or why photos of dead babies would fall under the definition of 'freaky'. Really, her opinions probably fall with those of the majority of humans out there, she just expressed it in an offensive manner. Same with my friends...who view pregnancy and birth as a time for stress surely...but ultimately of happiness and joy. They have never experienced anything else. Just like those people who view the NICU as a foreign world, full of things they do not understand and cannot imagine...and like it that way.

But I can understand, and imagine, and accept. And I hope, in time to view it as a gift, rather than a curse.

Have your views of illness and death been affected since the event? Do you find yourself more accepting of others and their world view? Does baby Willard freak you out? Or can you see past his dead-ness to the cute little guy he would have been?


  1. - Absolutely. Dead bodies used to scare me. I'd seen a few in my life and was in the room when my mom died. But its different when its your baby, and you grew it, and you hold it. I'm no longer afraid to die really.
    - I am much more understanding and accepting of others just IN GENERAL really now. Because I'm fully aware now that people could have absolute horrors going on behind closed doors.
    - Baby Willard is a beautiful beautiful baby. : ) I am a little surprised at the context- finding his pic on Etsy freaks me out lol but HE doesn't and his photo doesn't.

  2. Emily, this is an absolutely amazing post. I only wish that young woman who wrote the article that sparked it would read your words. But I doubt she will sadly.

    I can fully understand why people would rather shut out places like NICUs, events like the death of a baby. I wouldn't judge them for that. I would appreciate receiving the same understanding in return.

    I don't tend to 'invite' people in. I would never describe the details of my own experience to anyone outside of this community. I can understand why others would rather hold on to their assumptions that it will never happen to them. If it hadn't happened to me, I would feel the same way. But it did happen to me and I wish that other people would let me deal with my own grief as I see fit.

    Baby Willard doesn't freak me out. He's rather lovely actually. I think I'm become accustomed to pictures of the dead. Like Lucid Anne, finding his picture on Etsy freaks me out than his sweet little self.

  3. I have to admit that I have a hard time seeing the pictures of dead babies.

    I've never been a fan of the idea of dead bodies. It's always bothered me, creeped me out in a very instinctive sort of way that I had no control of. I always assumed that maybe, someday, if it was someone I cared about, that I would feel differently, instead of that sort of revulsed "ugh I could never..." I'd feel whenever you'd see someone weeping and clutching a dead loved one in a movie, or something.

    I can, definitely say, without a damn doubt that I do not feel at all differently when it's the body of someone I care about. I tried to touch Caleb as he was dying when ECMO was shut off. I couldn't do it. I almost threw up on the spot. In that very moment, I was keeping it together better than Josh was. But I couldn't do it. I couldn't touch him, so I just held Josh while he had his emotions.

    I don't feel bad about it -- I felt that my son was already gone, and we were just letting this failing body of his be done. I don't wish that I had the stomach to have held him. But I think it has made me even more squicked out by bodies. It's all the discomfort I had with it before, wrapped up with the distinct, visceral knowing, and the reminder of my own darkest moment.

    I don't begrudge those that can. Or those that put the pictures of their dead babies on their blogs. I guess I am lucky in that I have pictures of him alive to look at. And maybe I would feel differently if the photo of my stillborn child was the only thing I had. I can understand that.

    I will say, though, that I have the utmost respect for the staff that were there with us that day, that held Caleb when we could not, that did all those dark, unpretty things, and went back to their jobs that day, and the next day.

  4. This is really beautiful, thank you.

    Seeing photos of dead babies doesn't upset me, but I totally understand that it does upset others and so I don't pass judgment on people who find it uncomfortable. It is more difficult by far to see the grief of those surrounding the death than the physical evidence of it. Death is a part of life. It is ugly and it hurts and, in my opinion, it should not be hidden away like a dirty secret.

    My experience with the death of my son has definitely made me more compassionate. When I see someone walking down the street, seemingly happy (maybe truly, I don't know) I often wonder about what personal traumas he/she might be experiencing. It has given me a new perspective on the complexity of peoples' lives. You never know what is going on under the surface.

  5. Thank you for this post and thank you for your blog. Yours is one of the few (many) that I lurk on and I rarely post anything. As I'm grieving, reading your posts and your emotions helps me sort through mine and not just push everything away. So, don't be swayed by others who haven't experienced what those of us who've lost babies have experienced. You said it nicely in this post. Please continue on as long as you need/want to...

  6. I saw a dead 6 mos. old baby at his funeral at church and the casket was open and the sight of this poor dead, cold,lifeless baby(who had make up from the funeral home that was garish and eerie) broke my heart and disturbed me to such an extent the image was burned into my mind and gave me nightmares at night; sadness for the mother, fear it could happen to my baby,and just the extreme grief, sorrow, and the tragic reality of it shook me to the core and really rattled me in a sorrowful way.It was so heartbreaking and affected me deeply for months and it wasn't even MY baby!

  7. I can understand & respect others not wanting to view images of dead children. I think it's kind of horrifying to be living in a time when bloody and brutal death is almost casually sprayed over movie screens and at the same time to be part of a culture that works so hard to seperate ourselves from real death, but, well, it's just how we are in the world right now. What I have no patience for are people with no experience of infant death who assume they know what grief over the loss of a child should look like and then tell the truly heartbroken that they're doing grief wrong. It's one thing to go through life clueless and self-righteous & another to turn cluelessness into cruelty, however unintended.

    I think Willard is a beautiful little by, but finding his photo on Etsy makes me achingly sad. I need to make arrangements for what will happen to my own momentos & photos so the don't end up garage-sales off or thrown in the dumpster some day.

  8. This is a beautiful post. My view of death has certainly changed since I lost Oliver. I actually didn't see Oliver after he died because I was too afraid. I felt like I already knew his spirit and I didn't want to see his failed little body and have it be the only memory. I thought at the time, it would be harder. Oh, the things I've learned since then. I luckily have photos of him and those that have helped in the healing process.

    I used to not even be able to look at photos of a premature living baby. It was hard to look at and probably deep down scared me. What if that ever happens to me type thing. Of course, no one wants to see a child suffering, or worse dead, but I see those photos much differently now. I often think about how 3 months ago I never even knew what a 16 week old baby looked like. Know I know all too well.

    I too feel like I've become somewhat more compassionate. You do never know what is going on in someones life. I'm sure people would never guess I lost a child when I was 19 weeks pregnant, so who's to say the woman in front of me at the store hasn't been through the same thing.

    I agree that the photo of Willard doesn't freak me out, but I do agree that it is a little strange that it is on etsy.

  9. In my old life, life before June 6, 2010, I hated funerals and death. I hated attending services for those that I loved who had passed. I didn't like walking pass the open casket, or touching the cold, hard body.

    Now, in my new life, I go back to that day, June 6, 2010 when I spent just a short 28 hours with Wytatt. I don't think I even realized it, but I spent my whole day with death that day, and I loved and enjoed every minute of it. I delivered my son in his angel form, I wrapped my arms around my son for hours, I slept with my son, and I had to say goodbye to my son. I cling to his memories of when I carried him in me but more so when I held him in the hospital. I think about the fact that my entire family held him, and not one of them thought of how he was already "an angel". I remember my mom even rocking him. Why wouldn't she, he was her first grandson.
    To answer your question, yes I have changed. I can hold, kiss, and love what others may call death.

    I do find myself more open to others feelings, thoughts and opinions. I find myself this way because I am no longer the same person I was prior to June 6, 2010. I have changed. I have grown emotionally and mentally.

    As for baby Willard, he doesn't freak me out. He is so adorable. I love the fact that in 99 years, nothing has changed. Mothers and Fathers still take photos of their children in angel form and share them with friends, family, and others experiencing loss. If someone would have told me I couldn't photograph my child, I probably wouldn't be typing this right now.

  10. I am less afraid to die then I used to be. I've never really been afraid to see dead people. All of the funerals that I've been to have been for adults, but I always looked at them in their casket if it was open.

    I do see the world a little differently though. I always assumed that I would be here next week, next month, next year etc. Now I make plans for something and one of my first thoughts is to wonder if everyone going to the event will still be here, or what major thing will change in their life before the event.

    Whenever I'm walking around in public, I look at the people around me and wonder what is going in their lives. People would never guess by looking at me that my baby died 2 months ago. When my sister found out that Jacob had died and she was coming to Oakville to the hospital, she was riding the subway to Kipling with her sunglasses on to hide her crying. She later told me she sat there wondering how many times she has seen someone on the train in the middle of a crisis and not known it.

    I do think I am more accepting of others. When someone seems to be in a bad mood, I don't just think that they are being a jerk that day, I wonder what is going on in their personal life that might be causing it.

    Baby Willard doesn't freak me out. In fact, I think he looks really endearing and my first thought was how much pain his parents must have been in. He was dressed so nicely and buried with such a nice blanket and casket. I was surprised that his picture is for sale on Etsy.

    As you know, I used to volunteer at Sick Kids. I was so used to holding babies with multiple tubes...IV's, NG tubes, heart monitors etc, that when I held a baby that didn't have any of those things, I still found myself watching for the tubes, making sure nothing was being pulled too tightly, was being bent etc. People who had never been in Sick Kids would be surprised when I told them how used to that I was, and I wasn't used to holding a healthy baby. And I was only a volunteer!

  11. I think Baby Willard is precious. And it breaks my heart to know his picture is being sold online. Did his parents treasure that picture for years? Was that photo kept in a special place? How many tears were shed over that photo? Did he have siblings? Wasn't there anyone in the family who felt they should hold onto that picture - just out of deceny? Who was the family member who finally got rid of it? It just breaks my heart.

    As far as the blogger who posted not nice things about baby loss... when I think of her, I think of someone incredibly naive. I'm sure she is young. I wonder if she has any children of her own. Mostly, though, I hope baby loss never happens to her. Even though what she writes makes me angry and upset - I hope she never, ever has to walk in our shoes.

  12. This is a(nother) wonderful post, Emily.

    Baby Willard is beautiful. I would never have guessed that photo was 99 years old. Like the others, I do find it sad that it's for sale on Etsy, though.

    I didn't even bring a camera to the hospital because the very thought of taking photos of a dead infant was just too morbid to contemplate. I think it is my single biggest regret of my whole loss experience. This was before digital photography & NILMDTS. The nurses took a half dozen Polaroids for us & they are absolutely awful (in three of them, you can't see Katie's face -- she's just a little while bundle in our arms) -- but of course, they are precious to me because they're all I have. My support group facilitator helped do infant bereavement care education for nurses, funeral directors, etc., & told me she'd like to borrow my photos as an example of what NOT to do.

    I found the first few photos of other dead infants that I saw after my own loss to be disturbing -- but I have seen so many in the years since then, through my volunteer work, that I no longer find them shocking. I actually find most of them deeply moving, and I am so glad to see that the quality of the photos that parents are getting now is so much better.

    I can see why such photos would be shocking/disturbing to many people... we are such a death-denying society, & as you said, the death of a child or infant is probably the most taboo subject of all. Fewer babies do die these days, thanks to modern medicine, so far fewer people have had that experience. We've all attended funerals, but how many people these days have had to attend a baby's funeral? And even when a baby does die today, not everyone has a funeral... we kept our daughter's funeral very small (immediate family only, just 11 of us) because I simply couldn't bear the thought of handling everyone else's grief on top of our own.

    Sometimes I think that was a mistake. Perhaps if we'd had a funeral & let people come, it would have made our loss, made stillbirth, more real to them. I don't know.

  13. I think the photo of Willard is sad, just because it seems disrespectful and crass to sell it. But the picture itself doesn't bother me. If it was my great-great-great uncle or something, I'd treasure it. I almost want to buy it just so that sweet baby has a good home and not one that has it just for kicks.

    I never have been bothered by photos of dead or premature babies - maybe it was a premonition?? Now, though, I seek them out. I love seeing the pictures of other babies that passed. I'm sure that sounds totally creepy and insane, but it gives me comfort to know that there were so many other babies out there like Caleb and that their families loved them and thought they were beautiful as well.

  14. (I just commented as well, on her second post about it.)