Eva’s Story

Lori Larson is Eva’s mother. Eva was born with Miller Dieker Syndrome. Eva—which literally means “life”— would live for 22 precious days in the NICU. Here, Lori shares her story of receiving a diagnosis, Eva’s life and her legacy ‘EvaLasting Peace’.

Diagnosis 

I never knew how dark the world could appear on a bright summer day until the moment we received Eva’s terminal diagnosis. August, 16, 2017, the warmest month of the year in our corner of the United States, is when our world went dark. Diagnosis day will always be the worst day to me because it’s when we found out she was going to die. The night she died was when she left her broken body and at least found peace.

We received a phone call from the geneticist explaining our amniocentesis results. A test we chose to take so we could find an answer to Eva’s long list of abnormalities. I was 28 weeks pregnant. The geneticist explained the duplication on chromosome 1, and deletion on chromosome 17—Miller Dieker syndrome (lissencephaly). All I could hear was my baby will die. It took me almost a month to recognize she was probably going to live first.

 I never knew how dark the world could appear on a bright summer day until the moment we received Eva’s terminal diagnosis.

We stopped with the intensive monitoring since we knew Eva’s fate. She looked perfect on the ultrasound screen to me, but we always had to go through the long list of anomalies to see if anything had changed. All it really did was remind me every week that there would be no miracles for our daughter.

Eva’s diagnosis was severe, her brain did not develop with the typical grooves, it was smooth. I actually remember the thought I was having before the life-changing phone call. I was driving home from work hoping it was Down’s syndrome, even though I’d already cleared that blood test. If we had to jump into the genetics crap shoot, please let it be the syndrome where we get to keep her, and love her for years. The one where our son, Max, can be a big brother. Our mind does bizarre things when we are desperate. I was still so naïve. 

All I could hear was, “profound developmental delays,” before I asked the geneticist to hold on so I could get home to Joe.

Carrying Eva

I wrote the following a month after we found out Eva’s diagnosis and a month before her induction:

“Most women who get to this later stage of pregnancy can’t wait to birth their child and get their body back. But they also have the joy of a healthy baby to look forward to, while it’s more complicated over here. She’s inside me now, stable, moving and growing. Once she comes out a whole can of worms opens up. What has been in the future will now be in the present.

Don’t get me wrong, as any expectant mother I’m excited to meet precious Eva. I can’t wait to see her halo-like soft hair that we can already make out in the ultrasound photos. Her hair is dark when I dream about holding her in my arms.

To see Max’s joy when he holds her for the first time, and Joe gazing into his mysterious girl’s eyes. To listen as family and friends try to pinpoint who she looks like. There is joy that comes with her arrival. But like everything involving Eva, it’s bittersweet.

Meeting Eva also means learning more about her condition and our future life together. That is, if we have a future life together. There is a part of me that wants my former body back, but what that means seems all too heavy to face.

Eva will no longer be tucked safe inside of me. We will no longer have our secret connection that only I can feel and sense. When I turn on the blow-dryer she won’t be inside me to jump around to the loud noise, or her squirming when music is played in her presence.

Right now I am her vessel, we are connected, we are one. Pregnancy is a place I’ve crawled to get back to, I adore carrying my children. This didn’t go as I had visualized and dreamed about. No, this is a darker, deeper side of carrying life inside of you.”

My biggest fear was that people would view Eva as "less than," and in turn view our grief as trivial because of her condition. Never did we ever want our child to suffer, and we understand she is free from pain and experiencing everlasting peace. But, there’s still someone missing from our family, there’s the love we made room for in our hearts that now has only the heavens to point to. 

Lori pregnant with Eva

Eva on Earth 

Eva’s birth was magical. She came earth side with her father, brother and grandmother in the room. Also our doula and a dear friend who came not long after to take photos, which I now cherish. Our girl was so full of life her daddy thought a miracle took place. She nursed for her only time and after two hours let out the sweetest little kitten cry—is there anything more beautiful to a parent’s ears? 

I loved getting to mother again and promised her that I would smother her in as many kisses as possible. I can still feel her soft fuzzy head under my chin as she laid on my chest. Eva—which literally means “life”— would live for 22 precious days in the NICU. 

• How did I ever stumble across the threshold of our home, carrying the phone, screaming for Joe to come listen to the geneticist crush our souls?

• How did we ever get through those first black hours knowing our daughter’s fate?

• How did I ever go in public pregnant with all the sweet comments about my baby that broke me from people who didn’t know?

• How did I ever return to work, and still complete a book design for the printer?

• How did I ever carry a terminally ill baby for two whole months and sleep at night?

• How did I make it through all those doctors appointments that reminded me time and again how very complex she was?

• How did we tell her brother that his baby just might not make it home? 

• How did we utterly break his innocence?

• How the hell did I get out of bed every single morning?

• How did I walk through the hospital to labor and delivery with the escort who said, “Oh good, I like when people are here for happy things,” without completely breaking down?

• How did I push through the fear and gracefully birth my babe?

• How did I patiently wait by her bedside most days without scooping her up?

• How did I find the courage to tell her it was okay to go?

• How did I never wail from the top of my lungs in that hospital on the night she died, “Give me my baby back!!!”

• How did we get here, years later, without our daughter physically in our arms?

LOVE. Love got us here.

Our love for our daughter, our love for our son, our love for each other, love from our family and friends, and nurses, and doctors and strangers. Love from the infinite, and love from EVA.

Eva at birth

Love after Loss

You see, I trust Eva lives on. We have a connection that has carried me through excruciating grief. There was a soul in that broken body. She has been by my side encouraging this connection with tangible signs. The biggest one being a little brother, Leo, that came two years after his sister. With a 20% chance of having another baby with Miller Dieker syndrome we were frozen to try again.

Yet, somehow Leo snuck through and is our fist accidental pregnancy in 25 years together. After five years of trying to conceive a sibling for our son. Eva kept whispering to me in meditation to trust that a baby was coming. In the early weeks of pregnancy, before genetic testing, she kept reassuring me that her little brother would be okay. And she was right.

We have gradually learned to parent Eva in a different way. Our family includes her in simple ways like her Christmas stocking that hangs in between her brothers’. We hold her photo in our family portraits. There is a corner of our living room that is dedicated to our Eva, with her ashes, items like the unicorn daddy put in her stocking this year, and beautiful artwork. Many people gifted us with thoughtful trinkets to remember her by. I even have her umbilical cord dried in the shape of a heart, and her dark golden locks tucked in a box. 

Eva’s corner of the Larson living room including her ashes.

I got her hair out recently to compare with her baby brother—identical shade. It’s heart-warming to see how our children are bonded.

Max asks thoughtful questions about his sister now that he’s older. They were just having a discussion in school about bullying, and he brought up how he was nervous that his sister would have been bullied because she looked different. “It’s something she was born with, just like people’s skin color, why would anyone be bullied about something they can’t control?” He’s learned a lot from his sister. I think he’s more comfortable with death than a lot of adults. Everything that lives will die, and I want him to find the richness in that idea.

Max finds signs from his sister too, especially when her lucky number 17 is involved. Eva was born at 7:17 in 2017 was 17 inches long and missing a portion of chromosome 17—of course it is her number. 

I have found other bereaved parents that also share this lucky number with us. Connecting through social media with parents whose child had Miller Dieker syndrome and now with fellow pregnancy and baby loss parents has been crucial to my healing. I needed to know that we were not alone.

I needed to share the dark thoughts and understand grief at this depth. I needed to know it was “normal.” I learned from parents how best to care for my girl when the medical community only saw her as rare. Now, I share our story so the parents of the newly diagnosed or the bereaved know they are not alone. 

I’m driven to help other parents understand grief is normal and that their child also lives on. They are safe, they are whole and they are with you still. There is a comfort in that for me, and I believe for others as well.

On the last day of Eva’s life she stared at me for about 15 minutes, her beloved nurse even noticed. I spoke to her about how much she is loved, how brave she was to choose this life, and what an impact she has had on us all. I didn’t know this was our last day together, but I now know she was saying goodbye. She is wiser than I. Eva has taught me there is a lot to be learned from reflection. I have slowly moved out of the darkness and into the light more and more. Her life is significant and will not be taken for granted. We honor Eva by living a full life, until we are in each other’s arms once again.