Trigger warning: infant death, depression
Okay. This is it. The story I both dread telling and want to scream to the world. I’m going to lay it all out for you. The good, the bad, the ugly. And trust me, there’s plenty of bad and ugly.
This is the story of my sweet Sage, my first baby, my first daughter. The soul that was taken far too soon. This is the story of her life and death.
It’s not an easy one to read or write, so please proceed with care–for yourself and my family. No matter how many years have passed, the grief, the sorrow still feel fresh. Losing a child is a wound that never heals. I don’t want it to heal.
I was so excited when we found out I was pregnant with our first. I’ve always wanted children, a big family. We had recently celebrated our wedding and were adjusting to careers post grad school. It was an exciting time.
Everything was great until our anatomy scan. I was so excited to find out what we were having (I had a feeling it was a girl). I remember this all so vividly. My ultrasound was scheduled for a day when we had snow and ice, which is unusual where I live. The ultrasound tech never made it in because of the ice. I sat in that waiting room forever. Eventually, they had one of the doctors do the ultrasound. That being my first baby, I didn’t think anything of it when they told me I’d need to come back later in the week because they couldn’t get a good look at baby girl’s head (yes–it was a girl!). I just went about my day, excited for my daughter. I already had two stepsons, so we were stoked to have a girl.
I went back a day or two later, and I’ll never forget the midwife’s words: “I don’t have good news.”
You know how in the movies when something earth shattering happens, time seems to slow or stop completely? Yeah, well, I felt that happen. Everything slowed down. It felt like I was in a tunnel. I was convinced it was a joke. A cruel joke. But it wasn’t.
My daughter, my perfect, beautiful, oh-so-wanted daughter had a devastating birth defect called anencephaly. My baby girl’s brain and skull never formed properly. It’s a neural tube defect (kin to spina bifida), and it’s terminal. There is no surviving it.
Rain poured down that day, like the universe knew.
My daughter was going to die. No matter what I did. My body was her safe space. Where she could live. But as soon as she was born, we wouldn’t have much time with her, if any.
To say we were devastated is an understatement. I cried for days. I worked from home because I couldn’t bear to go to the office and see my coworkers. I knew the pity and sadness I’d see on their faces would just make me burst into tears. So I isolated. Because what else could I do?
The midwife told me there wasn’t anything they could legally do for me at that point–I was 20 weeks along, too far for an abortion in my state. She offered resources if I wanted them. I didn’t. I’m pro-choice, and my choice in this instance was to keep my baby and give her her best shot. She was alive and moving inside me, and I wasn’t ready to give her up. My husband agreed. He’s the most supportive man–he told me it was ultimately my choice because it’s my body, but that she was still our little girl, and we would do everything in our power to surround her with love and life.
I love him infinitely for that.
It was also the hardest thing I think I’ve ever done aside from holding her while she died.
We didn’t tell anyone except our close family and a couple friends that are more family than anything. I couldn’t make those calls. He had to do it for me. I just couldn’t come to grips with losing my child.
I grieved silently while we celebrated her outwardly. We wanted her to feel all the love and happiness the world had for her. But inside I was breaking. Depression slithered in and took root. But I smiled and laughed and went about life around everyone else while I carried this unbearable weight silently. Inside and in my quiet moments, I sobbed.
I raged.
Because I wanted this baby so much. And she was going to be taken from me. She’d never come home with us. She’d never know her siblings. I’d never see her smile or hear her laugh. I was losing everything I’d ever hoped for.
Genetically, birth defects don’t run in my family or my husband’s. It was a freak occurrence. Or maybe not. We lived in a place that had water issues. They didn’t come to light until years after I moved there. There was a chemical being dumped in the water system called GenX. It’s related to teflon. It’s toxic. It causes all kinds of health issues, including cancer and birth defects.
I can’t prove it, but I know this is what caused my daughter’s death sentence.
I carried my baby to 36 weeks before we induced labor. It was terrifying. We had no idea if she’d survive birth, and if she did, how long we’d have with her.
She was born alive. Her heart was beating. She never took a breath. She was only about 4 lbs. She was missing an essential part of her, but she was beautiful and perfect and didn’t deserve to die. Her heart beat for an hour.
My baby lived for an hour. An hour where we cuddled her and took her in, learning our daughter. An hour I’ll never forget. An hour I’ll eternally miss. An hour of love and loss and grief and sorrow and amazement that we created a human. She was surrounded by love and loved ones.
After she passed, we had her organs donated. That was an incredibly hard decision. But we wanted the world to feel the impact of her short life.
She kept her eyes. I couldn’t bear to part with them. I can’t explain it, but losing her eyes felt like too much when so much was already being taken. Grief doesn’t always make sense.
She was too small for them to use her organs for transplant, but they were used for research. They helped people. She helped people. Our daughter did more in her short life than many people do with decades.
I miss my sweet Sage every single day. Grief doesn’t go away. It just changes.
Her ife and death are surrounded by so many politicized events and issues. Abortion. Pollution. Women’s rights. Reproductive rights and issues. Access to good healthcare and clean water.
Sage is not a political statement. But for me, she is a pillar of what is right and wrong with this country (US).
More than that, she is my heart. She is the part of my soul I don’t get to watch grow. She is the angel watching over her siblings. She is my beautiful butterfly.
And she is my grief and sorrow. My biggest heartbreak. But also one of my greatest joys. I will never regret her, but I will always miss her.
My body remembers her, no matter how many years pass. She would have been finishing kindergarten this year. That hit hard. Six. She would be six. So many milestones missed. So many years without her in my arms.
With Mother’s Day approaching, she’s been on my mind. Her birthday just passed. And now we’ll celebrate all the moms soon. I have to remember to be gentle with myself. Even before my other kids were born, I was a mom. Sage made me a mom.
Be gentle with the moms out there. You never know what silent grief they may be battling. And just because you don’t see their children, that doesn’t make them any less of a mother.
And to those mamas who have lost and are grieving: I see you. I’m here with you. Nothing ever makes it okay, but sit with that grief and remember the beautiful souls behind it. Wrap yourself in their memories.
And please, please ask for help if you need it. There is no shame in needing help and taking care of yourself, however that looks. I’ve been on depression meds for the past five years, and I honestly don’t know where I’d be if I hadn’t admitted that I wasn’t okay. A good therapist helps too. It takes tiny steps every day, but your soul will settle.
It can be hard to talk about our absent babies, but I think it’s so important. They are a part of us, no matter how long they inhabited our bodies. They deserve to be remembered. And if it makes others uncomfortable, good. Our grief is not something to hide, and our babies are worth talking about. Make them feel uncomfortable because our babies deserve more.
Rage for those tiny souls, mamas.
