Our story of love and loss is a little different. We were given our son’s fatal diagnosis at the 20 week anatomy scan and shared an additional 15 weeks with him growing in my womb before we had to say goodbye. It has been four months since our son Noah passed away in our arms. I remember dreaming of being on this side of pregnancy and simultaneously dreading it because I knew my new normal would forever be touched by the deep grief of losing a child.
Two days before Christmas, I begged the scheduler to let us have our 20 week scan a few days early. In my bliss, I wanted to be able to tell all our family if we were expecting a little boy or another little girl on Christmas morning. But in my gut, I had a terrible dread that something was wrong and wanted to see for myself that our baby was safe. I’ll never forget sitting next to my husband in the hospital waiting room. We were the last appointment of the day before the holiday leave and another happy couple bounced out of the ultrasound room and pointed out a rainbow behind us as they left. I stared at that rainbow knowing it was for me. It was a foreshadowing reminder of my faith that God was with me during a storm, the storm that was waiting for me down the hall. During our appointment the tech wouldn’t look us in the eyes after the first few minutes and wore a very serious expression. I knew she wouldn’t answer my questions so I squeezed my husband’s hand tighter and listened to our baby’s steady heartbeat trying to give myself hope that my anxiety was for nothing. After a long look, she excused herself to talk to her supervisor. My heart sank when he came in to tell us we needed to go upstairs to talk to the doctor. I cried hard in my husband’s arms as we waited to be called back.
We were brought into a tiny room with couches and far too many tissue boxes and were gently told all the vast physical anomalies with our baby. Limb Body Wall Complex was the diagnosis that came out of her mouth. But all I could hear was “incompatible with life” and my head started to spin. She said a lot of other things... listing his specific anomalies, then the uncertainly of a safe delivery due to him being fused to the placenta and an unknown amount of time the pregnancy would continue. I made the wrong choice to search google images after the appointment and immediately closed my phone in horror. How was this possible? How is he still alive? Would he look like a monster? Did he feel pain? Why us? Why my first son? Did I do something to cause this? What do we do now?
My first reaction was not one of denial. I have equal respect for science and faith and knew the facts of his condition before me, my son would not live and we had to figure out what to do next for our family. My first reaction was anger, deep and fierce anger. We were given 2 choices due to our insurance and state: continue on for a potential 20 more weeks knowing the baby growing inside me would not live past a day or go to a clinic, weave through protesters shaming us for our “choice” and pay thousands of dollars out of pocket for my baby to be taken from me. I don’t care what your political affiliation is, but a mother faced with a fatal condition diagnosis for her baby should only be shown love and compassion for whatever choice she makes for herself and baby. Politics do not belong in grief and it’s taboo to talk about, but that’s why I feel led to mention it because there is such a divide in this small community of women faced with a fatal diagnosis. My heart breaks for those that chose to end their suffering and their baby’s early as much as my own story hurts, they are loss moms too and grieve for their wanted babies. You still have every right to name your baby and talk about them. You are loved and your grief is not less because of your impossible choice.
Our hearts led us to continue the pregnancy, for personal and safety reasons I felt strongly that I needed to deliver in a hospital and go through the whole process to work through it. I have no regrets in choosing to carry to term and I feel like that’s the most I could’ve ever asked for in our situation. I feel an indescribable peace that I like to think of as my son’s gift to me.
After we found out his diagnosis, I ran everyday. I ran as hard and fast as my body would let me. I listened to the angsty metal music of my youth while I exhausted myself. It was the only way to tame the anger and sadness. For a time I was even angry at my doctors and wanted new ones because in all our discussions I felt like I was the only patient they cared about, not our son. Was he suffering? Why can’t we deliver early if he’s declining? Am I safe here? I let my emotions and fear rule that first month (grief and pregnancy hormones don’t go well together).
Then in February, our Kansas City Chiefs won the Super Bowl and I felt him finally give a strong kick. My heart changed from anger and wishing away this agonizing pregnancy to protectiveness and wanting to keep him safe for as long as I could. I wanted to make special memories with him and make his delivery day as peaceful as I could. I found a park by the beach that I could go to during pregnancy and afterwards that is our spot to feel close to him. I joined a Facebook group with moms facing the same diagnosis and read the book “I Will Carry You” by Angie Smith that was really helpful in accepting my pregnancy with love. I wrote down no less than 10 questions per doctor appointment and researched all I could about the disease and those who carried their babies with the same condition so I could get an idea of what to expect. The game Animal Crossing was also a huge part of my coping at the end of pregnancy and even now, I loved making a cute little island where babies didn’t die and covid didn’t exist, it was a happy distraction. My nesting didn’t look like buying cribs and planning baby showers, it was researching affordable cremation and picking out the only 2 outfits he would ever wear and ordering newborn hats in multiple sizes because I didn’t know when he’d arrive. My nosy Facebook ads quickly (but not quickly enough) changed from sales on baby clothes and baby toys to urns and cremation jewelry. It felt so odd to feel Noah kick while I was picking out the urn for him, it didn’t feel natural, but planning something I could and feeling that small sense of control over something was important. Journaling my feelings and getting it out of my brain also really helped. My hospital bag was full of paper, ink pads, clay prints, extra blankets for memorial gifts, his burial outfit and the outfit I’d keep in his memory box forever, and the lavender lotion so I could always remember his smell. Humor is my defense mechanism and grief tends to make your sense of humor and bluntness a little darker. But I like to think God knew me well enough to know I’m a planner. So even in my darkest time and deepest grief, I was allowed time to plan and I’m forever grateful for that small gift.
Then March happened. Covid-19 happened. I have a small tinge of anger resurface whenever I see those “I delivered during a pandemic” stories or news articles that have the intention of empowering birthing moms, but sometimes all I see is what I lost. I didn’t feel like I could relate to those strong pandemic birthing moms because I didn’t have a baby to show for it. I lost my son, I lost having a bereavement doula with me, I lost my birth photographer, I lost my pastor baptizing Noah, I lost getting my pedicure to feel pretty while I labored, I lost planning the cross country flight to bury his urn in the family cemetery with a proper funeral, I lost extended family and friends being able to hold Noah for the one and only time in his life. The fear came again... being scared of an emergency happening during delivery, or taking away my husband if he tested positive. My husband’s ship also made the decision to quarantine everyone and send them underway so they could be mission ready. Up until the week before, we did not know if he would get to stay home even with our extreme circumstance. The amount of uncertainty in our story was overwhelming, even down to the delivery day. It’s hard to have a personal crisis when the world was having its own crisis. I lost the little control I felt I had and learned to let it go and trust my faith.
Plans were adjusted the best we could and our focus came down to what was really important to have that day. It felt like I was in a constant state of prayer for my safety and for us to have this peaceful moment together as a family. My husband was granted permission to stay home with us, our church said we could perform our own baptism or blessing on Noah, my dad and daughter were made exceptions to the no visitor rule and I’m forever grateful I got to hold both my babies at the same time.
At 35 weeks, I laughed so hard I broke my waters. Laughter tears turned into soft sad tears knowing this was the end of our time with Noah. For two days I labored with my sweet boy because they said it would be safer for my body to have him vaginally. It felt like we had an army of emotional support around us during our hospital stay from the doctors and nurses, plus texts from my original OB who couldn’t be there due to quarantine, our bereavement doula, Sydelle, and a fellow mom whose son Jonah had the same diagnosis and walked with me during our pregnancies. In those two days I was put on the full amount of Pitocin, bounced on balls, took showers, tried dozens of positions, but still my body couldn’t let him go. Also his nonexistent cord wouldn’t allow him to descend so Thursday morning on April 9th, we decided to have a cesarean. I hadn’t felt him kick in 24 hours, but as soon as we turned off the pitocin, he gave a strong kick and I burst into tears that he was still there. I felt a peace that we made the right decision. We were wielded back into surgery with Frank Sinatra playing to calm my nerves. I couldn’t have asked for a better team of people to care for us. Noah didn’t cry when he was born because his lungs wouldn’t allow him to, but he was placed into our arms wrapped in a soft white blanket with a beating heart. His face was so beautiful and perfect despite his broken body below his chest. We baptized him and I sang to him until his heart slowed to a stop and he went to go be in the arms of Jesus.
My daughter and dad were soon allowed to come see us in the room. Elizabeth brought a book to read to her baby brother and it was a beautiful brief moment. She looked at him with such love and I’m glad she was able to meet her brother before saying goodbye. During pregnancy I wondered if I would be able to fully look at my son. I was able to unwrap his dressings without fear and I’m glad I got to see my baby’s whole body even in its brokenness. Plus I couldn’t get over his perfect face that looked so much like his sister when she was born. He was part of us and I wanted to remember everything about him. We kept him overnight in the cuddlecot, but I often took him out just to feel all 5lbs of him on my chest. I took all the pictures, made prints, rubbed lavender lotion on his back while singing to him like he could still feel my love and we knew the next day it was our time to say goodbye. My only slight regret about the day is I wish I could’ve taken more pictures and maybe fixed up my hair to look a little nicer in them because they’re the only ones I’ll ever have holding him.
After we came home, I felt empty, but also strangely relieved. My son wasn’t in pain anymore and I didn’t have to feel fear over an uncertain delivery anymore. However I was frustrated that my body couldn’t recognize there was no baby to feed and stay up late with. My milk coming in and the postpartum aches and bleeding were harsh reminders of what was missing. And a cesarean scar that permanently runs across my body that reminds me of the quiet OR. A physical reminder of a much bigger emotional cut. My village surrounding us the next couple weeks were what helped me survive. I’m thankful I had my dad and sister nearby to love on our daughter for a week after delivery to allow my husband and I time to grieve alone. Then my best friend organized a meal train for me and gave me a care package and hug, social distancing be damned. It meant so much to just have people love on us even in the awkwardness. There’s nothing you can really say to a grieving parent, it’s the showing up that’s appreciated because this new club can be a lonely one.
Grief for me is like standing by the ocean. Some waves completely engulf you and you feel like you’re drowning, while other waves just lap at your feet. I welcome all the waves with the knowledge that my grief is all the love I have for my son with no place to go and there’s no shame in that love. I loved my little boy and I want my pain to have a purpose- to let other women in this situation know they aren’t alone and that there are brighter days ahead.