Kaytee Fisher
Loss of daughter, Elliott to skeletal dysplasia
Hi Kaytee! Tell us, what’s your story?
I’m Kaytee, a 30 year old pediatric nurse and small business owner. Originally from Toledo, Ohio, I moved to Saline, Michigan when I was 19 and have been here ever since. My husband, rescued pup Mac, and I live in a ranch we bought when we had only been dating for 18 months. 12 years later, and we still like one another. We met on the internet before meeting on the internet was cool. We’re perfectly opposite of one another - he’s the rational and logical one and I’m forever trying to convince him to sell all of our worldly possessions and run away together, even though I’m also perfectly content to be an old lady working in my garden. I have a lemon tree in my kitchen, because I refuse to admit that I don’t yet live in the tropics.
I prefer to spend my time and money on experiences and travel instead of things, and I’m a novice minimalist who follows an alarming number of Tiny Home Instagram accounts. I’m a tattooed liberal, a vegan feminist non-believer who has just started to settle into being who I really am, and it feels pretty good to not worry too much about what others may think of those labels. I think that most people take life too seriously, and I’m a big fan of carving out my own rules and following my gut, even it if makes people shake their head in disapproval. It’s not because I fancy myself a rebel, I’m just painfully aware of how short life can be and I don’t have time to adhere to the LifeScript that does not suit me. I believe “no” is a full sentence, and the death of my daughter really made me examine that belief from an entirely new perspective.
I don’t think I have too many weird quirks (others may disagree, ha!), but I won’t get into a swimming pool. Ocean? Sure. Lake? Yep. Giant chlorine-pee combo? No thanks.
I’ve been told I’m funny, and probably relate too much to those memes about trauma and humor. “I’m here for a good time, not a long time” is probably a phrase I say too often. My humor is probably a touch too dark - is it a coping mechanism or should I schedule another therapy appointment? Either way, I finally like who I am, and boy what a journey it’s been.
You and your husband lost your child at birth. Can you share about that experience?
We were the “lucky ones” - good jobs, cute starter home, only tried to get pregnant for three months before those two pink lines showed up. 18 weeks of headaches and morning sickness culminated in a less-than-ideal anatomy scan at 19 weeks. I work with kids who are born with congenital defects, and while it had crossed my anxiety-riddled mind that it could happen, I had convinced myself that it wouldn’t happen to us. Looking back, I feel that I had a “mother’s intuition” that something was wrong, but chalked it up to being overly paranoid.
The ultrasound tech measured my unborn baby girl’s bones over and over, but I wasn’t paying attention to that - I was just excited to see her little form, curled up there in my womb. After 30 minutes of waiting, a doctor came in and told us she had a form of skeletal dysplasia, and whether it was lethal or not could only be determined by amniocentesis. The next four weeks were a blur. We held on to hope that the worst case scenario would be your run-of-the-mill dwarfism, and while not ideal, we could manage that. I ordered books on raising a child with special needs and had just convinced myself that we could raise a feisty, vivacious little girl and all would be fine. Then at 10:01 AM on March 6, 2017, we received a call that her amnio results showed the absolute worst kind of skeletal dysplasia - Thanatophoric Dysplasia. It was lethal. No matter how much therapy I do, I’ll never be able to erase the sound of my own primal screaming that came out of my body after that phone call.
We chose to continue our pregnancy for as long we safely could. My belly on my 5’1” frame was already huge, she was a wild thing in there, and we needed more time. We had the full support of family, friends, and employers to spend our time purposefully while she was still here. My niece, who was 4 at the time, decided the baby’s name was Flower. She wasn’t “here” yet, but she had already made her mark.
I was able to make it to 30 weeks before her head circumference had grown too much to safely consider a vaginal birth (this was a hallmark of her diagnosis) - and a c-section, for many reasons, was unsafe for me. I was induced on a Monday night and she arrived Wednesday, breech and alive, but quiet and already a heartbreaking shade of blue. I held her on my chest while my husband cleaned her face, in a silent room of medical professionals working to clean and stitch me up, and I knew I would never be the same again. It was the most beautiful and tragic day of my life.
Our daughter, Elliott Rose Fisher, lived for about 20 minutes. I don’t know her exact time of death, and I am grateful for that. All I know is that she died peacefully, being held by her parents, and never knew any kind of pain.
“While it had crossed my anxiety-riddled mind that it could happen, I had convinced myself that it wouldn’t happen to us.”
Do you think it helped to be aware of Elliott’s skeletal dysplasia during your pregnancy?
I hate surprises, and there’s nothing more surprising than being told your child will die immediately after birth. Knowing her diagnosis gave us time to plan her death, spend purposeful time together while I was still pregnant, and begin grieving long before we handed her little body over to the funeral home.
There are moments when I feel anger about it though. Moments where I see blissfully naive pregnant women and wish I could have experienced 40 weeks of pregnancy without the heavy weight of death lingering over it. But I know my trauma would have been magnified so much more than it already is if I wouldn’t have had time to process. I am at peace because I have so few regrets about Elliott’s death and our experience surrounding those events, due to the fact that we knew she’d die.
How did you cope in the immediate days/weeks/months after the death of Elliott?
I barely remember the initial days after her death. I was so incredibly disassociated from reality. Since we had started grieving long before her death, I thought the fog wouldn’t be so profoundly heavy, but I was terribly mistaken.
My memories from those initial months are scattered and fragmented at best. My memory only allows certain snippets to come through - glimpses of me siting on the floor in just my mesh hospital underwear and giant maternity pad, sobbing as my milk came in. Falling asleep clutching her tiny bag of ashes. Lots and lots of nightmares. And the worst - waking up, and for a split second, forgetting what had happened until my hand wandered down to my now-empty belly.
I isolated myself. Around the same time, a number of my friends were also pregnant. I didn’t want to be the bad omen, nor did I want to witness their joy. I did a lot of yard work, taking my rage out on the flower beds. I wrote - updating her blog, contributing to Still Standing (an online magazine for child loss). I took a million bubble baths, trying to recapture the feeling of peace I had in the bath when she was still in my womb.
I didn’t do a lot of coping. I was so angry. Angry at other pregnant women. Angry at my body. Angry that nobody really seemed to understand how deeply devastated I was. So much rage stuck with me for months and months.
One thing that did bring me comfort were the decisions we made immediately following her death. We kept her body close to us for a full 24 hours - a taboo but beautiful experience that I know makes some people cringe. But to those people, I urge them to stop and think about that for a second. When you have a child, you assume you’ll get to spend the rest of your life with them. I had a measly 24 hours, which may seem way too long to some people to keep a deceased body at the bedside, but was actually so painfully short. I stayed awake for most of it, even though I had just spent two and half days laboring. We had our birth photographer capture every heartbreaking moment, photos I will cherish forever. We bathed her, dressed her, read to her. We slept with her between us, wrapped in a blanket I had furiously crocheted in the weeks before her death. We spent hours taking in her tiny details and scent, desperate to commit them to memory before she was gone forever.
Those memories were the only thing that carried me through some of the darkest moments following her death. Our family was able to meet her, hold her and say their hellos and goodbyes, and for that I am so grateful.
Can you talk about a specific low point or struggle you experienced?
There were a series of hard realizations throughout our pregnancy and the weeks/months following. We started therapy as a couple as soon as we found out her diagnosis was lethal, but what can really prepare you for such a surreal experience?
Perhaps the worst and most receptive realization was that she wasn’t coming home. Her freshly painted nursery would remain empty. The hospital bag I packed didn’t need to include a coming home outfit, only a “going to the funeral home” outfit. A week before we found out that she would die, I had purchased all of her nursery stuff. A week later, in the middle of a huge snowfall, my mom and I made our way around town, returning all of it. It was just stuff, but it symbolized an entire part of my life I’d never be able to experience normally again.
Buying an urn for a baby is horrifying, but doing it while she rolled and kicked inside of me was a real life nightmare. Having to answer all of the stupid questions people ask pregnant women, and not wanting to shock them with the truth was brutal. Telling inquiring strangers my due date, knowing full well that she’d be dead by then was heart wrenching. After Elliott’s death, I had to navigate the seemingly ONLY question women my age are asked: “Do you have children?” I’ve become an expert at quickly assessing my surroundings to determine if this person is worthy of knowing Elliott’s story. I used to feel immense guilt for denying her existence, but now I know it is a method of self-preservation. Does this person deserve to know my story? If not, then I simply answer with a brief “nope, no children at home” and change the topic. Elliott’s life and death are sacred, and I treat it as such with strangers.
I went back to work 3 months after Elliott died. I didn’t last long before I went back on leave, not once, but twice more. Some of my more difficult moments happened there in the hospital, working with sick children. Every single one of them was Elliott. Why couldn’t she just have had something fixable? Why don’t these parents realize how much worse it could be? Why do I have to listen to my coworkers complain about their children, when mine is a pile of ashes at home on the dresser? Again, my anger simmered just under the surface, tainting every interaction I had with another human untouched by child loss.
My lowest point came about 3 days after her death, when my milk, postpartum hormones, and the full weight of what I had just gone through hit me all at once. Up until this point in my life, I had never experienced such a deep desire to go to sleep and not wake up. Not suicidal, but so deeply devastatingly sad that I could not imagine my way back. Every morning, waking up felt like a punishment. A life long sentence to be served for daring to what? Have a family? It was the lowest point of my grief. I just wanted her back, and every time I realized that wasn’t possible, the wind was knocked out of me. That experience shook me, not only because I had never known of a grief so strong, but because of my close experience with the suicide of my father as a child. Later on in therapy, I’d come to realize that those really dark moments allowed me to empathize and forgive my dad for his decision to end his life. I’d never wish that kind of pain on anyone.
Most recently, my struggle has been figuring out where I fit in. What do you call a woman like me? I’m married “with” a child, but not really, so I don’t quite fit in with the mommy crowd. It might seem obvious that I’d find solace in the loss moms crowd, but even that has its baggage. We’re all focused on ourselves, so finding a stable friendship can be difficult. Along with that, many loss mothers go on to have rainbow babies or have other children at home, and can’t quite fully understand the decision not to pursue that. I am both childfree and childless, and the search for someone like me can become daunting and lonely.
How did you manage to find joy in those moments?
It didn’t come easily, but I started to find joy (in very very small increments) by working on being present. I had spent a lot of time just sitting on the couch, feeling Elliott roll, trying to memorize her movements in the womb when I was still pregnant with her. I tried to tap into that presence whenever I started feeling the overwhelm of my reality taking hold. I had to work really hard to hold on to joy while I was still pregnant, knowing she would die. I’d go sit outside and just feel the sun on my face, the breeze, the sounds of the birds. It sounds pretty woo-woo, but it’s all I could do to calm down my nervous system in those moments.
I read every loss and grief book I could get my hands on. Weepy ones. Deep ones. Darkly humorous ones. I worked in the yard until I ran out of space to plant flowers. I sunk an alarming amount of money and time into a half sleeve tattoo dedicated to our sweet wildflower, as we call her. The pain of sitting for session after session for that tattoo was something I welcomed. It distracted me for a few hours at a time of what I was feeling internally. It was an oddly healing time for me.
Have your thoughts about having kids shifted since the loss of your daughter?
Most certainly. At my 6 week postpartum appointment, I was cleared to “try again” if I wished. And wish I did. Looking back, I’m now able to recognize that I was not ready to conceive another child at that time - certainly not for the right reasons - and I’m so grateful that our attempts were unsuccessful. To anyone reading this who has never experienced infant loss, this will sound crazy (and it probably is) - but in my grief riddled mind, getting pregnant again would “bring her back”… see? Crazy. I could not separate pregnancy from her existence. We tried unsuccessfully for 7 months before I was diagnosed with PTSD and anxiety. We stopped trying while I went on a leave from work and did intensive therapy. And as I worked my way through therapy and dug myself out of my fog, I started to realize something that I had known deep down all along. I had been afraid to admit it to myself, my husband, and others - I didn’t want another child. I had no desire. Nothing. No baby fever. Growing up, I had never really wanted children. But what a monster, right? Did this mean I didn’t want my daughter? Is that why she died - the universe cruelly mocking me, punishing me? If I didn’t want children, then why did the sight of a pregnant woman send me into a spiral? None of it made sense, and I pushed these thoughts away for a long time.
I had followed the LifeScript - go to college, get the job, the house, the husband. Then have babies. I was 26 when Elliott was conceived, and I recently realized that I had never stopped to think about why I wanted children. That’s just “what you do” and so I did it.
I don’t regret her existence for one second. I long for her every single day, and if given the chance, I’d give anything to have her back. But that’s what has taken me nearly 4 years to come to terms with and start being comfortable enough to share: I can simultaneously miss my daughter, and not want more children. It doesn’t mean I’m glad she died. It doesn’t mean I “dodged a bullet” or escaped parenthood. My life took this ridiculously wild turn for the worst, but in the end, I came to a place of clarity that I may not have otherwise known. I want Elliott and only Elliott, and if I can’t have her, I’m content to close this chapter of my life. Some people tell me I’ll regret it - ironically those are the same ones who complain incessantly about their children, but that’s neither here nor there. However, I’d rather regret not having more children than have another baby and know that I did it selfishly to attempt to heal a part of my soul that really can’t be healed by another human being.
Some people might think I’ve chosen to not have more children out of fear, but that’s not it either. Statistically speaking, I’d probably have a healthy child. But I have also learned that I don’t need to explain myself. I simply do not want more children. That’s it. That’s the beginning and the end of the story. It has brought me a sense of peace. Was that Elliott’s purpose? To open my eyes to living authentically, living my life for me instead of others? I’m not sure, but I am grateful for this little soul who briefly swooped in and changed me forever.
How has that loss affected how you live your life today?
In the best and worst ways. Sometimes I wish that I could rewind to the days of being blissfully ignorant about mortality - mine and those around me. Maybe it’s macabre, but I am so painfully aware of death now that I’ve carried it with me in my womb for weeks. I believe there are few things in life that will irreversibly change you, and one of those is holding your child as they die.
I think of old Kaytee and how she thought she was soooo good at living life to the fullest, but that was a sham. Nothing scares me anymore. I’ve done the hard thing and survived, and it has freed me. I speak more honestly, take more risks, and really really live like I am dying - because aren’t we all? It’s never been more painfully obvious to me how many people move through life like that have a ton of time. It’s so ignorant, but I did that too. I no longer worry if people approve of my decisions or if I’m following the “rules” because I know some day, none of it will matter. I want to live a full, honest, abundant life according to my rules, leaving as much kindness behind as I can, and die knowing that I lived a life full enough for me and Elliott. I refuse to live a life soured by my loss - I had to choose between being bitter and angry, or letting it change me for the better.
I’m also far more protective of my time. I know some people (hi, mom!) believe that there are “things in life you just have to do” but I don’t subscribe to that. Obviously, yes, I have to go to work and pay my mortgage, but I no longer worry about tending to all of the monotonous optional stuff us humans make ourselves do even though we don’t want to. Family get together during a week that’s really sucky? No thanks. Baby showers? Absolutely not. Watching a father-daughter dance at a wedding and politely clapping? Nope, I’m going outside for some air.
It’s freeing to live in a way that demands respect - not just respect for me from others, but me respecting myself and what I’ve been through. I don’t shy away from talking about mental health, death, loss, or trauma. We live in a traumatized society, and sometimes I wonder how much better off we’d be if we all just got a goddamn therapist.
It didn’t happen overnight, but I’ve come to a place of peace with Elliott’s short and beautiful life. I don’t wallow in her death, but instead choose to celebrate her life. It’s not always easy, but it’s the most rewarding path to take with my grief. What a gift that she chose me, that I was part of her story, and that I was able to change so much about myself for the better because of her. I’m far more passionate about living than I ever was before she came along.
What do you want others to know about the loss of a child?
Oh boy. Where to begin. First of all, stop trying to fix it. Stop trying to fix the grieving parent. Stop trying to rush them through a process that is truly one-of-a-kind. They made a human that is literally part of them and then had to bury that beloved human, so back.the.fuck.off. It might not look like they are working on their trauma and grief, but they are, and they don’t need to report to anyone.
Secondly, DO NOT EVER (!!!!) ask a loss parent about having more children. Nothing stings more than having people assume another baby will fix it. It will not. I have responded to prying people by responding with: “I could have 20 more children and none of them would be Elliott.” Think there’s a timeline when it suddenly becomes okay to ask a grieving mother about more children? Think again. There is not and never will be a time when it is okay to ask a grieving woman (or any woman, let’s be real) about her reproductive plans. Do not ask a woman about her plans for children if you’re not ready to hear an uncomfortable truth.
Don’t compare it to losing a dog (yes, someone did this to me). Don’t compare it to losing a parent, or a grandparent. I’ve been there, done that, and it’s not the same. Don’t tell them it will “start to feel better after X number of days/weeks/months.” I once had a childfree woman try to tell me that it would fade because grief and love are not linked. That woman is lucky it was over the internet, and not in person. Don’t tell them it was “God’s plan” as one woman did at my daughter’s memorial. Please please please do not try to romanticize or put a pretty bow on death. Death is inevitable, yes, but it is sad, and there are not enough angel metaphors in the world to make me feel better.
Lastly, don’t try to define their loss in terms of what you think is worthy of deep grief. I know mamas who have lost babies at 5 weeks and 40 weeks. I know women who have chosen termination for medical reasons. I know women who have had to let their children on life support go, or women like me, who weighed the odds, and chose the peace of death over a life living on machines for their children. All of these woman are invested in motherhood and devastated that it was ripped from them. Do not judge what you do not know. Just be grateful you don’t have to know it.
How can a person best be there to support someone struggling with grief and loss?
Just show up. Don’t ask what the grieving person needs, because they have no idea. Just DO something.
The best people in my life during our journey through the diagnosis and Elliott’s death were the ones who just showed up. They didn’t try to get me to talk or force me to heal. They showed up with food and restaurant gift cards and soaps and lotions and flowers. They dropped off Mother’s Day cards (Elliott died just before my first Mother’s Day). They texted or called with no expectation that I’d respond. They were just there, present, and did not make it about them.
A dear friend of mine wrangled her three littles into her van and drove 45 minutes to my house with huge meals multiple times. The food was incredibly helpful, but the fact that she had her kids stay in the van so I wouldn’t have to see children was that extra bit of awareness that I needed from people. My 70-something year old traditional meat and potatoes grama learned to cook vegan food for my husband and I to live off of for weeks. Donations were made in Elliott’s name. The company that produced the soap and lotion we bathed Elliott in after her death sent me a huge care package full of the scent I associated with her little body. All of these little things meant so much for my broken heart. The doing is what made a difference.
The people who tended to my husband were incredible. Everyone focuses on the woman during a pregnancy or child loss, but I felt helpless to support my husband. I had enough attention on me and I just desperately needed someone to care for him. Little acts of kindness, like dropping off a goodie bag just for him, filled with his favorite snacks, or acknowledging his fatherhood was a light in the dark.
What wasn’t helpful? Empty platitudes. “Sending thoughts and prayers” and then doing absolutely nothing. Silence from the ones you thought would be there the most. Assuming that I needed or wanted certain things or nothing at all. Not acknowledging Elliott as a person who lived and died, and pretending I lost a pregnancy instead of a little human.
“People who speak Elliott’s name without hesitation or awkwardness are angels on earth. I never let it go unnoticed that such a simple act means so much. I love hearing her name, and it never makes me sad. It fills me with joy.”
Any resources that have been helpful for you - on either grief or cancer?
There are so many various resources depending on someone’s personal loss situation, but I found solace in books like The Gift of Time, which guided us through planning Elliott’s death. Books by Dr. Joanne Cacciatore and Nora McInerny helped me navigate my grief with words that resonated with me. I attended a loss mom’s retreat, where I was free to be vulnerable and open about my loss. Writing for and reading the words of other loss parents on the Still Standing website was crucial in the early days.
Social media accounts like @griefunfolding and @the.holistic.psychologist helped me find the words for what I was feeling but couldn’t explain myself.
The medical team and palliative care team that guided me through my pregnancy with compassion and honesty were paramount in making the worst experience a bit more tolerable. If someone is experiencing a prenatal diagnosis, please do yourself a favor and find a good medical team who will support whatever decision you choose to make. Their guidance and expertise allowed me to step out of my “nurse” role and focus on being a mom. They explained to my grieving family what Elliott would look life after death, and assured them that she would feel no pain. They supported our decision to let nature take its course after her birth, and instilled confidence in us that she would not suffer as she died.
Lastly, I will never stop shouting from the rooftops that therapy is a must after an experience like child loss. Nobody can survive this without professional help, in my opinion. I received EMDR therapy for months to help ease the symptoms of PTSD, and I often shudder at the thought of where I might have ended up without it. I’ve worked on my anger and can now address conflict and big emotional charges without a knee-jerk reaction. We need to de-stigmatize therapy and mental health, and I will gladly help in that fight by being unashamed of my mental health struggles and stories. The only way to heal from something awful is by charging through it, head on. You can’t take shortcuts or ignore it, because it will always be waiting.
What brings you joy now?
For a while after Elliott died, I thought I had to move mountains to prove my undying love for her. I had to establish non-profits and lead child loss revolutions in her honor, otherwise people would think I didn’t really love her right?
I finally realized that the simplest acts could be done in her honor. Simple things, like writing her name in the sand at the beach, or on top of a mountain in the snow. Getting out of bed, facing the fay, and living exuberantly were small ways to make sure her short life was honored. Allowing myself to be vulnerable and honest with others and continuing to work on self-improvement with Elliott as a motivator is a daily source of joy for me. Her life and death broke me wide open and I am happy to live more intentionally and slow down to really take in my surroundings. It sounds cliche, but how many of us really take notice of our surroundings and the beauty of it all? Oddly enough, being so painfully aware of my own mortality allows me to live a more joyful life. Standing in the kitchen window, letting the afternoon light hit my face while my tea brews. Picking a vase of flowers from her garden. Watching the rain hit the window or the clouds change shape. All small but really powerful acts of slow living have allowed me to heal at my own pace.
We celebrate her birthday every year with the same few routines, and I find comfort in knowing that her day will always be set aside for my husband and I to ritualistically honor her with cupcakes, music, and whatever amount of silence or laughter we need in that moment.
The birth plan we wrote for Elliott is now used as the template for other loss parents who will deliver at the same hospital she was born in. We donated dozens of copies of The Gift of Time to the team who works with parents like us, navigating a lethal prenatal diagnosis.
We have a whole list of things we want to do to leave an imprint on this world in her memory, but from day to day, I focus on living fully enough for the both of us. I think she’d like that the most.
From others, joy comes in the form of those who recognize my motherhood. Other pregnant women who don’t shy away from my labor and delivery experience have moved me to tears by simply asking about my epidural, or what I packed, or what giant maternity pads work best. Treating me like any other mother who has experienced some of the “normal mom” things is a big deal. Friends and family have come to associate Elliott with wildflowers, and receiving a surprise text, sharing a field of wildflowers or the result from a packet of seeds from her funeral will never stop being my favorite. People who speak Elliott’s name without hesitation or awkwardness are angels on earth. I never let it go unnoticed that such a simple act means so much. I love hearing her name, and it never makes me sad. It fills me with joy.
Anything else you’d like readers to know?
Stop assuming that everyone wants the same things out of life. Do I understand why someone wants a house full of children? Nope, but good for them. I ask for the same respect. Maybe some people don’t understand why I want to continue my life without a child to raise, but they don’t understand that I am still actively mothering Elliott by mothering myself, and likely always will be. I’m gentler with myself, I challenge myself more than I did before. I look at life through the lens of someone who has seen horrific trauma and made it to the other side. I think society would be much better off if we stopped examining everything through our own beliefs and approached one another with more empathy. If there’s one good thing that comes from Elliott’s death, it’s that the people who hear her story will approach life in a gentler and more empathetic way. Life is hard enough without us making it harder for one another.
Stop being weirded out by death. It’s literally the one thing every single one of us has in common, and yet we are so so bad at addressing it.
Grieving people will be tending to their grief for the rest of their lives. There are days when the grief hits me hard, out of nowhere, and brings me to my knees. Life can get busy, and Elliott is never far from my heart or mind, but it’s easy to forget to actively nurture that grief and give it the attention it demands. I hope those big waves of grief never stop surprising me, because although jarring, each new shockwave reveals a new layer of myself to me. I’m forever learning because of her.
Want to learn more about Kaytee and her story? Check out Elliott Rose Fisher, a blog started by Kaytee and her husband during their pregnancy. You can also read her thoughts on Elliott and loss on her Instagram account, @missing_ellie.