Mom Talk: A Daughter I Never Got to Hold

Written by

Emily Thompson

9:00 am
09/06/19

Photography by Chris Daniels

In today’s Mom Talk, Emily Thompson bravely and beautifully shares the story of her daughter Georgia: Her first baby, who was diagnosed with fetal hydrops and cystic hygroma at her 21-week anatomy scan. Emily talks about how she and her husband dealt with their grief of learning their daughter would not survive much longer, while cherishing the short time they had left with her. Emily is a freelance writer, creative director, and podcast producer based in the Pacific Northwest.

I have a daughter. My husband is a father. I am now a mother. Our baby’s name is Georgia.

When I imagine two people being parents, I often also imagine first steps, lots of snuggles and kisses on soft, good smelling baby heads, school lunches, play dates. We imagined all these things, too, when we became pregnant with our daughter last August. Our first pregnancy, our first baby, after almost seven years as a couple. We conceived within a few months of trying, and I can’t say that we quite knew how to feel in those first moments of seeing the positive test. We just kind of looked at each other like, “Whoa. Is this for real?”

As those early weeks passed and morning sickness came knocking, we moved into a new house in a new city. Every breath, every action, every intention was with our expectant babe in mind. Around eight weeks we heard her heartbeat for the first time, and I know both of ours skipped a beat at the sound. At 11 weeks, we saw our little one for the first time on an ultrasound. She looked like a little ball of light, dancing and wiggling around in my belly. We both went home on cloud nine, feeling a euphoria we had never before experienced. We were hooked. We were a family.

At around 13 weeks, our girl started showing herself via my growing belly. My husband is an incredibly talented portrait photographer, and he started doing a weekly photo of baby and me, always trying to come up with a new idea for how to show her off in an interesting, beautiful way. Spending this time together, the three of us creating something together, it was the first glimpse into our future of doing life with our baby. Meanwhile, I had another art project for just baby and me. I had chosen a few simple colors of belly-safe paint, and when I felt like I noticed a change in her size, I would use my belly like a stamp to make some minimal abstract designs on some nice art paper. As my belly grew bigger, the transferred paint shapes grew smaller. This time with her made me so excited for a future of crafting and baking together, of me watching her make things with her little hands.

The holidays arrived when we were around 15 weeks. My parents came to visit us, and we told them the news that we were pregnant. My mom basically happy screamed in a public restaurant and then started telling everyone who came to our table that she was going to be a grandmother again. Our excitement couldn’t help but pick up steam once we started sharing the good news. Soon after, we made our May arrival public news and we heard over and over from friends and family how we were going to be such great parents. The more I heard it, the more I started to believe it, too.

December of that year was, to date, the most joyful time of my life. We chopped down our own Christmas tree, and it made the house smell like heaven for weeks. With one hand on my belly, I baked several hundred cookies to ship out to friends and family. I hand embroidered flax linen stockings with all our names in black thread to hang on the mantle. One for Dan, one for me, one for the cats, our dog Bo, and of course, one for our little babe.

A few days before Christmas I was itching to do something festive, so we piled into the car with the dog and headed towards Mount Rainier National Forest to find some snow magic. As the trees got taller and thicker, the snow got denser and more beautiful, blanketing everything. We let the dog run and play in the deep snow. Meanwhile, I stood and marveled at the quiet beauty around me. We both later reflected on the day (which ended in cheeseburgers at our favorite old-school drive-in) sharing that we had both felt, maybe for the first time, like we were all really there together. Dan, myself, the baby, the dog. We were us; a new family. We made plans to bring her back to that spot where we played in the snow the following year.

As the year ended we stayed warm by the fireplace, snuggled up on the couch together watching our favorite holiday movies a million times. As much as I tried to savor every moment, I was so overwhelmed with excitement for everything that the next year was going to bring. We were going to meet our baby, start really learning how to be a mother and a father, and there would be so many milestones to celebrate along the way.

Our anatomy scan was scheduled for January 3 at 21 weeks. We had waited an extra week because our new insurance had just kicked in on the 1st of the year. Finally, we would learn whether we were having a boy or a girl. I hadn’t ever felt strongly one way or another, but once I met my husband and discovered how wonderful of a man he truly is, I began to long for a daughter so that he could be her father. I had spent hours upon hours making the world’s most perfect baby registry for my shower that was planned for mid-March. Even though most of the baby clothes I had registered for would be perfect whether it was a boy or a girl, I had snuck a few things in that were definitely a bit more lady-leaning. I had my hopes up, and somewhere along the way, Dan got his hopes up for a girl, too.

The morning of the scan I was awake by 5am. I love my sleep and being an early riser only happens for flights or days that are too exciting to sleep. I wore my favorite jumpsuit that was perfect for accommodating a rapidly growing belly (but that was still easy to take on and off considering the constant need to pee thing). Just before we pulled away from the house, Dan ran back inside to grab his camera which at the time felt like such a cute “dad” thing to do. I don’t remember anything else about the car ride there. I think we were both mentally lost in “our baby” land. Part of me wishes I had known this was the last time our life would ever just feel normal and blissfully happy.

The day of the scan was also the day the new U.S. Congress was being sworn in. I told the ultrasound tech I was hoping all of the new women in Congress being sworn in that day was a good sign that we were having a girl. The ultrasound room we were in was not exactly a room. It was more like a tiny dark closet with a curtain hanging in the doorway. We all wedged in there, and she squirted that lubricant on my belly like it was any old day, just another scan.

I couldn’t see the ultrasound screen from where I was lying, but I heard her starting to describe all of the fluid that she was seeing in the baby’s abdomen and chest and telling my husband that when they see something like that, they would typically refer you to a specialist. My best memory of the worst moment of my life tells me I must have then proceeded to temporarily black out. Daniel was stumbling through the words, “Are you trying to say that we need to see a specialist?” “Yes,” she said.

Fast forward to the following afternoon (because reliving coming home from that first appointment basically consists of us being in shock, a friend feeding us ice cream, crying all night, more shock, etc.) and we’re at the office of a Maternal-Fetal Medicine Specialist we’re paying for out of pocket because we’ve been told he’s the best. And he was. His techs were the best, too. We got to visit with our baby on a big, high-definition television screen while I sat in what was basically an electric La-Z-Boy. If parents of sick and dying babies could be pampered, we were being pampered. The tech showed us every part of our girl, and that was when we learned our dreams had come true and she was a she. That moment was the definition of bittersweet.

The doctor came in a few minutes later after watching the images come in from a screen in his office and gave us the worst news we could have ever imagined in the kindest way possible. He told us our baby’s lymphatic system wasn’t functioning, and this meant that instead of her body processing fluid the way yours or mine does, it was backing up into her little body causing something called fetal hydrops. She also had something called cystic hygroma, which is when fluid-filled sacs develop on the back of the neck from that same back-up of fluid.

When I heard “fluid in the body,” I thought to myself, “Well yeah… fluid in the body. That sounds normal.” We all have lots of fluid moving around in there, right? But this wasn’t normal, and it was compromising the ability for any of her internal organs to grow. Her lungs were almost non-existent because the fluid had taken over all of the space in her abdomen and chest and was continuing to stretch the limits of that space. He told us that most babies he’d seen with her condition at this level of severity don’t live past 30 weeks. If she were able to make it to term, she would never be able to breathe on her own. And that was only one risk factor to consider. Our “options” were to wait it out or to end the pregnancy.

We did all of the recommended tests for any and everything that could have caused this, and the results were inconclusive. We got second and third opinions from doctors all over the country, and every answer was the same. Our baby was “incompatible with life,” her condition was getting worse, and because of the laws in our state, we had about a week to decide what to do about it. The day we found out we were going to lose her, one way or another, Daniel felt her kick for the first time. This was another moment of learning the real meaning of bittersweet.

We both knew, without even speaking the words to one another, what the best decision was for our baby. There was no “right” or “wrong” choice to be made, even though at the time it felt that way. I felt the weight of my identity, my family, our future all hanging in the balance of our decision. I feared incredible regret. I feared all of the myriad risks to my own health. I feared not having her in my belly. I feared keeping her in there. I feared the potential destruction of my marriage. But what I feared more than anything was letting our baby suffer. My primary drive was to take care of my baby, whatever that meant. No one loved her more than us. No one wanted to keep her forever more than we did.

In the 14 days between that first ultrasound appointment and when we terminated the pregnancy, we made a conscious choice to seize the time we had left with our baby. This choice has become the mantra for my life.

That first weekend we rented a little 1800s logging cabin (now an Airbnb) on the edge of the Hood Canal in Washington. We holed up in that little house with each other, a family of three, and watched as the sun set over the Olympic Mountains. We named our baby that weekend. Georgia Joan. A nod to Georgia O’Keefe and the place where we grew up and first learned to love each other. Joan because her toughness reminded us of the laundry list of badass women named Joan. Anytime I see the pinks and yellows of the sun setting over the mountains I think of her. I think of her anytime I see anything beautiful.

The rest of that week we lived in the present moment as much as we could. Dreading what was to come was easy, but it was even easier to continue loving and caring for Georgia as her parents. We kept doing our weekly photo, our last session on a cold little beach that was covered in huge sand dollars. I did a final baby bump print. Three bumps in three different colors to represent Dan, myself, and Georgia. We snuggled with her safe in my belly almost nonstop. I took several baths a day, just her and me. We listened to a lot of Fleetwood Mac and Van Morrison. I told her all about her family and the people who love her.

I never got to see my baby. I never got to hold her. I do wish I could have done those things. I am also grateful that she lives in my mind exactly as I envisioned her. There is no right or wrong decision. It’s about deciding the best choice for you and your family from the worst imaginable options. My most treasured possession in life is the set of her footprints that were taken for us. We had them framed, and they sit on our mantle next to a beautiful handmade urn a friend made us for her ashes.

Georgia’s birthday is January 17. But it doesn’t feel like a birthday. It feels like the anniversary of the very last thing I ever wanted in this world. We never learned and we will never know why this happened to our baby. That is one of the hardest pieces of this journey to live with. The bereavement doula we hired to support us through the termination and postpartum period told me a few weeks after we lost the baby about an article she read. It was from a medical journal, and it talked about how fetal DNA that floats around in the mother’s bloodstream during pregnancy lodges itself in her tissues and stays with her for the rest of her life. The takeaway being, even though the rest of my life with my baby looks nothing like I imagined it a few months ago, Georgia still lives inside me, in my very cells. She’s still with me. She’s with me every day, all day, for all days.

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Leave a Comment

5 comments

Sheila Brock

Georgia Joan is my granddaughter. Emily and Daniel have traveled through this dark journey with a deep, deep love for their daughter. I love all 3 of them to the moon and back. Emily, your writing is beautiful. You have helped so many other families with your honesty. Mom

Kelsey

Oh man. Reading this, sitting next to my oldest son as we watch a movie and crying at the sweetness and raw emotion. Wow. I can’t imagine the tragedy and the pain that you are going thru and will go thru but the reality is that you ARE a good mother and will be a good mother again. To another baby someday on earth, but forever to your sweet Georgia. Your sweet girl will always be with you and you will always have a connection to her! This post made me cry but also reminded me to cherish the simple moments and savor the time with my children. Thank you and I will be praying for your sweet heart as you heal and remember her!

Eliza

Beautiful. My heart goes out to his woman and her family!

Jen N

Hi Emily,

I wanted to let you know you’re not alone. I lost my identical twin girls at 20 weeks to twin to twin transfusion syndrome. I will never forget that feeling that you describe – the knowledge and identification that I am a mother now, though my baby is not here physically. That my husband is a dad. That everyone I know and love – must also know that the babies that we lost were real children, real humans. In sonograms they used to kick each other and roll around nuzzling each other. We never got to hold them when they were alive.

We were devastated. We felt lost. My husband and I thankfully found a great support group in NYC where we live – for parents that recently lost babies. The bond that we parents (without living children) all shared and the pain of leaving the hospital without our babies – was something only other parents who went through this could explain. My parents, who were with us when we lost the girls and I delivered them – also had to go through their own grief and trauma process. The loss they felt was real and the impact of the grief had real implications for them.

I will also never forget that I had to explain to the place that I work – that though I lost my babies and did not get to bring them home, I did give birth to them. To describe that I was physically recovering from the birth of a child and needed to take parental leave while I physically heal from the birth of my children. (Thankfully, they gave me an amazing 3 months paid parental leave off to recover and grieve – which probably saved my life and my marriage in the long run.)

I took the time I needed to heal. I cried and cried and cried and cried — until my husband pointed out – that we can’t live our lives completely destroyed by this grief. We want to have something to tell our girls when we meet them some day. We need to live life and be happy so we have stories to tell them and so we can make them proud. A lightning bolt of empathy hit me on the day when we lost the girls. A flash of awareness of the precious and fleeting thing that is life. I have carried this knowledge and love with me since then. Losing my girls somehow told me that – even when the worst thing in life happens, I can keep going. I kept living. Little by little, I saw that “I can do this”. That the smaller things in life really don’t matter. That I should never doubt myself.

Thank you for reminding me of that study about the fetal DNA. I love thinking that they are still with me right now, and with me every single day.

I have gone on to have two children (two boys) who are now 3 and 6. I haven’t yet told them about their big sisters for many reasons, but do plan to tell them someday soon.

I want to share something that actually happened, as it reminded me of the connectedness I feel with the girls. Each year on the “anniversary” of their due date we go to the beach and lit one of those paper sky-lanterns for each of our daughters. We would tell the girls that we love them, that we think about them all the time, that we can’t wait to meet you someday soon. When I was expecting my son – we went to the beach that night, said some words about the girls and sent the first lantern up to the sky and watched it until it disappeared (seemingly) into the stars. Then, we lit the second balloon and as the lantern went so far away that we could barely see it – looking like it was turning into a tiny star in the sky- a shooting star took off from the EXACT spot we were watching the lantern. My mom started crying and said, that she had asked for the girls to send us a sign that they were ok. They sure did let us know. All four of us on the beach saw it. It was complete magic.

Georgia is still with you all, I feel it. I send you such love. The journey ahead is not perfect or easy, but Georgia will always be by your side. xxo

Anonymous

I am so sorry for your loss. I too went through something very similar at 32 weeks pregnant. It has been, by far, the most challenging experience of my life. Ten years have passed since all of this had happened yet I still find myself at times so emotional about all of it. And when I read in your story the part about the DNA that lodges into the Mother’s tissue I could barely breathe through my tears. Thank you for sharing your story. Thank you for putting in that part about the medical journal as it some how was healing for me even after all of these years. Much love to you and your family and your beautiful Georgia Joan.

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