I Gave Birth To My Daughter, And She Died In My Arms Just 6 Days Later Due To Metabolic Disorder 

More Stories like:

Disclaimer: This story contains details pertaining to child loss that may be upsetting to some.

Child Loss

“I have thought about where to start this and somehow nothing feels right. I could start back when my husband and I met, fell in love and got married, had our 3 babies and were expecting our fourth. I could start in the ‘before’ when everything felt perfect, but I don’t exist there anymore. I exist somewhere between a past I can’t reconcile with a future I don’t want to face.

family of five with their dog, mom is pregnant
Courtesy of Alex Martin

So instead, I will start right at the end. Our daughter Darby was born on November 19th, 2021 and our whole world felt so whole, so warm and full of light. She loved being held by her two older sisters and brother and they loved holding her. Life was perfect. And then on November 25th 2021, on Thanksgiving, she died in the arms of my husband, while I kissed her forehead as the sobs of the doctors and nurses filled the room. 

dad holding his baby girl
Courtesy of Alex Martin

I’m still waiting to wake up from this nightmare. I’m still waiting on a different ending to the story. Still waiting on the part where this is just some sick joke. This isn’t real. I’m going to wake up and that breath of relief will finally come. We’re home, she’s safe. She’s resting peacefully beside me.

Still waiting to run into the doctor and instead of her telling me with her eyes, instead of her telling me what I already knew in my heart, that we were going to have to let her go… instead she tells me that everything was just a huge mix up. You’re awake and ready to nurse and we’ll be going home to enjoy Thanksgiving dinner with our family. 

Instead of walking down the hallway alone to tell my husband his daughter was going to die in one of our arms, instead I get to tell him she’s okay and see his face light up with relief. 

Wake up. Wake up. Wake UP. I’m screaming, but my body doesn’t listen. 

dad holding daughter looking at her
Courtesy of Alex Martin

Metabolic Disorder

I know you may be wondering what happened, but we don’t really know. The doctors think it was due to a metabolic disorder called Crigler Najjar and if you take the time to look that up, you will find yourself in the same obscure medical journals I desperately read after she died. Trying to find the answers, if only I could fix it. Please just let me fix it…

We are left with answers that aren’t answers at all. Having answers wouldn’t make it any better since the bottom line is she is not physically here. But, it leaves so much room for my mind to create scenarios where one little change could’ve made the difference in keeping her here with me. The ‘what if’s’ tear me apart. I can’t loosen my grip on the thoughts that I could have changed the outcome. That there’s some alternate reality where I got it right. An alternate reality where we are still physically together.

It feels like an impossible task is being asked of me. To continue. I dwell in the before. Before she was born and was still safe with me. When she was born everything was perfect. The days of pure bliss we had together. Before everything came crashing down. Before I started blaming myself. Before this feeling that I failed her. 

mom holding her baby bump
Courtesy of Alex Martin
husband and wife at a party, wife is pregnant
Courtesy of Alex Martin

‘There’s nothing you could have done, you did everything right.’ The doctors keep saying it. There was no escape for this inevitable horror? Nothing I could have done to save her? But I’m her mom. I was supposed to protect her. I failed her. How am I supposed to be a mom to my other kids when I’m a failure? None of this makes any sense. The thoughts are so intrusive. So loud. So punishing and cruel. 

mom sits in driveway with her three children
Courtesy of Alex Martin

Living With loss

The after. The existence in the muddied waters of the after is so complex. Almost impossible to describe to those on the outside looking in.

When people say, ‘I couldn’t live without my children.’ Well, you don’t. You die alongside them and the person that remains is some shattered version of a past that can’t be put back together. When they say to avoid triggers, but your beating heart only reminds you that theirs no longer is. When they say ‘time heals all wounds’ no it doesn’t. It only means more time has passed since I held my baby for the last time.

mom takes selfie with newborn baby on her chest
Courtesy of Alex Martin

After Darby died, I made a separate social media account to connect with other moms who understood my suffering. I use it as my therapy, as a way to put my feelings into words, yet somehow words always fall short. It hurts. In a way that blurs the lines of reality. It is a pain that makes me question the meaning of life, the weight of a second. When a second is the difference between her here safe in my arms and gone, not a second is not just a second. What do you call the space between life and death? The space between me and her that was so forcefully made? So many questions. Thousands of why’s shouted into a chasm that doesn’t answer back. An echo that is as empty as my world feels without her. 

Waking up the morning after, after the ‘I’ll see you later.’ After the ‘It’s okay you don’t have to fight anymore,’ was and remains unbearable.

baby resting in someone's arms
Courtesy of Alex Martin

I know people say you learn to live with this grief. And maybe what they’re trying to say is you start to forget. You forget a life before the pain. You forget what it feels like to be home. You forget what happiness used to feel like without being laced with sadness. And you accept that you feel lost walking down hallways that used to feel like home. 

I am so homesick for her.

It has been almost 9 months and for me, time has not been healing. Time has allowed the pain to find new crevices to seep into. The pain is in the simplicity. In the delicate moments that pass without much recognition, those simple moments I’ll never get to have with her, those moments are now left unwritten. Knowing I have to live the rest of my life without her physically here with me is suffocating.

Parenting With Grief

I don’t want to be here. I want to be with her. But I have to be here for her siblings. It’s an impossible pull. My heart shattered into pieces that are incapable of being put back together. That are scattered into chaos, of being here and being there. Impossible. 

big sister holding her newborn little sister
Courtesy of Alex Martin

Parenting while carrying this grief is so heavy. They are my life raft. They help keep my head above water and at the same time I feel like I’m drowning trying to keep them afloat. My children are the rope I’m holding onto. And I don’t want that burden on them. I see the pain in their faces of losing the mom they knew and loved. That version of their mom that no longer exists. 

two big sisters sit admiring their little sister
Courtesy of Alex Martin

We so often say children are resilient, but these little ones are taking on grief and concepts that are hard to grapple with as adults. My children know their baby sister died. I held them as they cried, ‘She’s dead!?!? No, no NO, NO, NO. I didn’t get to say goodbye. I don’t get to hold her again?’ Holding them as they woke up sobbing throughout the night, comforting their tears and screams that were the same ones caught in my chest. Witnessing their pain rocks me to my core. It is so painful. And knowing they are not only mourning Darby, but they are mourning me… that they now understand the finality of death. That they have lost their innocence so young… I am so sad that I couldn’t protect them from how painful life can be, if only for a little bit longer.

mom and dad holding their two daughters
Courtesy of Alex Martin

They truly are my life raft. When I’m drowning, they are there with a laugh to lend me a hug for comfort. I love them so much. I see Darby in them. And while they help keep my head above water, I still feel like I’m drowning trying to keep them afloat. The magnitude of parenting them while carrying this grief and attempting to shoulder theirs is not lost on me. It is so difficult. It is so hard, so painful. And I have no clue what I’m doing. I want their childhood to have a fullness that carries them through their lives. Full of love, warmth, happiness, security and joy. Filling their cup while mine is empty. Putting on their oxygen masks while the plane is going down and mine is nowhere to be found. I will give every last ounce of myself trying to keep them afloat. I pray for the strength to guide them through this darkness. And what is so profound is when I’m searching for a light to get us through, the light I find is them. Always them.

older sister holds her newborn sister
Courtesy of Alex Martin

Remembering Her

We include Darby in everything we do. She is included in every celebration, every little moment, every cheer and in every room of our home. We love all of the signs she sends us and we send her signs right back. We send her kisses every night. Her little brother helps me light candles for her twice a day. We float lanterns and talk to her. We bury notes for her under every tree we plant. 

sign for garden honoring daughter who passed
Courtesy of Alex Martin

Her love keeps me going. There are a few things that I tell myself that bring me comfort. One of them was the inspiration for the name behind my account. One night closer. Each night that passes means I’m one night closer to holding her and never letting go. This is temporary. This pain will not last forever because life does not last forever. This brings me some sense of peace, to be able to exist in the present, to find moments of happiness and joy that I cling to and in those moments in between when the pain is unbearable, I just remember to hold on until our forever begins.

mom laying in bed with her baby girl
Courtesy of Alex Martin

It feels as if seconds have passed and simultaneously like it’s been an entire lifetime since I last held her. I had her permanently written into every second of my life. And she still is. But now she is written in the stars.

To my beautiful Darby girl, I hope when I die and we are reunited, that it feels like you turned away for just a second and there I am. I pray there was never a second that you spent missing me because I was never even gone.

baby lays in someone's arms on a pillow
Courtesy of Alex Martin

I will always look for you. I see you in the sunsets, in butterflies that linger and stay for a while. I feel you in the wind and in the quiet moments that I talk to you. I see you in the stars and in the daisies that you send our way. Not a second goes by that I don’t think of you. I miss you. Every second and the spaces in between, I miss you.

I want you to know that you are so loved. You were here. You were real. Sometimes it feels like you were the best dream I ever had. But you were real. I carried you. I gave birth to you. I held you. I kissed you. I cuddled you. I loved on you. You matter. Your life matters. Your memory matters. You will always be remembered and I am so grateful that you picked me to be your momma. I love you forever and always.

dad sitting holding his baby daughter
Courtesy of Alex Martin

To anyone reading this, thank you for holding space for my broken heart. Thank you for allowing me to share about my daughter. Although her time here was short, she has impacted the hearts of more people than I can count, and I promise you this world is better off with her looking after it. She had this way of looking at you, she really looked at you and it made my heart burst with joy. She was so sweet, but tough, just like her brother and sisters. 

If I could ask anything, I would be so grateful if you could do a random act of kindness in Darby’s honor. Knowing she is remembered and loved and that her spirit can live on through the kindness of a stranger makes my eyes well up and my heart ache with love. Darby always sends daisies our way, so daisies are for Darby.”

baby girl cuddled up in blanket
Courtesy of Alex Martin
memorial frame honoring baby girl who died
Courtesy of Alex Martin

This story was submitted to Love What Matters by Alex Martin of Texas. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube  for our best videos.

Read more stories like this:

‘The OB dropped my newborn. ‘It’s OK, you’re young. You’ll have more.’: Mom appalled by preemie’s treatment in child birth, hopes other child loss parents ‘never feel alone’

‘I’d lie on the bathroom floor and tell God I was ready; he could take me. I’ll never be fully healed.’: Mom loses 6-day-old son to rare metabolic disorder, shares reality of grief

‘This Thanksgiving, I refuse to share what I’m ‘thankful’ for. Grief and gratitude can sit at the same table.’: Mom of child loss abstains from holiday traditions, ‘I’m still grateful, but bereaved’

‘My baby was there, but the heart was not.’: Woman starts nonprofit in honor of angel baby she lost

Do you know someone who could benefit from reading this? SHARE this story on Facebook with family and friends.

 Share  Tweet