The Story of Ada Marie Day

As an obgyn, I am so lucky to get to walk with women on some of the best days of their lives. I read once that the veil between heaven and earth is thin at the time of birth. Maybe that is why I cherish deliveries so much… being close to our creator in those miraculous moments when a brand new life enters this world for the first time. Those first breaths. There is no joy quite as deep as that of a mother holding her long awaited child for the first time. It is an honor to be one of the lucky few that gets to stand in that moment, to get to walk with women into and through motherhood. But I also walk with women on some of the worst days of their lives - days when unfortunately the veil between heaven and earth is not thin enough, when that baby is just beyond reach. There is no sorrow quite as deep as that of a mother who has just learned that she will forever walk this earth with a piece of her heart missing. It is an honor to share in those moments, too, and I remember the women who walk away empty. I remember your babies. I know their names. They will always be a part of my story, a part of my heart...But I never thought my story would involve my own loss. I never thought my baby’s name would be etched on the heart of my doctors. I walk with women through their grief. I was not expecting my own.

When we found out we were expecting our 5th baby, I was a little shocked and a little nervous. 5 kids seems like a lot… But quickly my apprehensions faded and we began to prepare for what life would be like with a new baby in our family. We soon learned our baby was a girl and the early screenings we did were normal. She was perfect and healthy and we could breathe a sigh of relief. We decided that my husband could name this one but I wanted to be surprised. I wanted him to tell me her name when they placed her on my chest in the delivery room. We could not wait to meet her.

One of the many blessings of being an obgyn is ready access to an ultrasound machine and a dear friend to scan me. And so, one night after work, I wanted to take a quick look and check on our girl. In those moments, my life changed forever. Instantly we could both see something was wrong. The scenarios that I had walked through with other women were now standing right before me. My head was spinning and my heart was breaking but I tried to hope for the best. We could manage a baby with a special medical condition. We would be fine with a child with special needs. I prayed that we would be able to bring this baby home. I could not imagine how I would ever survive any other outcome. Somehow we walked through the next few days until I was able to get in for an ultrasound at The University of Iowa. The moment the ultrasonographer started scanning I started to panic. I could not believe this was happening. I could very clearly see that my baby’s spine was curved like a J, there was no separation between her abdomen and the placenta, and all of her abdominal organs seemed to be growing outside of her abdomen. Her legs were twisted to the side and behind her. Something was very wrong. We were not going to get to bring her home. I wondered if my husband could tell by the images. I couldn’t breathe.  I couldn't tell him. My wonderful colleague came in and confirmed what I already knew. “This is not ok.” Limb Body Wall Complex is what our daughter had. No chance of survival after birth. A fatal condition. Our daughter will not live. But yet I just saw her kicking and moving her hands and her heart was beating. How could this be? I asked my husband for her name – Ada Marie. Her name means “adorned”. It was the perfect name. And we somehow walked to our car.

I can’t begin to describe what the next few days were like. We were devastated. We were in disbelief. Could this be a mistake? How will we survive this? Will our kids really have to go to their sister’s funeral?

Receiving the diagnosis that your baby has a fatal condition is like walking through a bunch of traumatic events, over and over again. It isn’t just one hard blow. It’s the diagnosis that maybe something is wrong. Then a little hope that maybe it’s not. Then making some new plans and doing a lot of research and holding onto hope. Then the blow that yes, indeed, something is very wrong, and then, still, a little hope. Maybe someone can fix this? Maybe we just need to find the right doctor? Maybe they are wrong. Maybe there will be a miracle. Then facing the facts that they are right and there is no doctor that can fix this. Our hopes changed – some days we hoped and prayed for miraculous healing, others we hoped for time with Ada. We hoped to hear her cry or to see her eyes or to hold her in our arms when she died. We made more new plans. We carried her with us and loved her as much as we could. And then the most devastating blow – she died. While we had started to wrap our minds around enjoying whatever time we had with her and prepared our hearts to hold our daughter when she died, she died way before we were ready for her to. There was mercy in this – she died early enough so that I didn’t have to have a c-section. She died before I had to tell my patients that I would be gone on a maternity leave for a child who would not stay with me. She died before I had to have the moment at the grocery store when someone saw my 4 rowdy kids and my growing belly and made a comment like “wow, you must have your hands full” in a seemingly lighthearted judgment without knowing the burden we were carrying. She died before we had to arrange our palliative care plan for her or make her funeral arrangements. But she died so much sooner than we wanted. Ada died before I got to tell my patients about her. Ada died before I could have shared her story with a stranger at the grocery store. Ada died before my husband could feel her move. It was as if she came for just a moment, to break our hearts open, to show us the unimaginable depth of love, and then, in a moment, she was gone. The stillness on the ultrasound screen was then followed by even more things that we did not want to face. The delivery, the handprints, the saying goodbye, the going home empty, and the walking through the rest of our lives on earth without a piece of our hearts. How would we ever smile again? None of this was how this was supposed to go. The past 6 months of grief have been dark. They have been really hard. Our hearts are broken. But in the breaking, they also found new depth, new meaning, and an even greater understanding of love. We have been blessed with many to support us on our way, and we pray that we might be able to offer some sort of support to others who may someday have to endure something like this.

I am deeply humbled to share a project that has come from the hearts of many shattered by the loss of their child, reaching out to touch the hearts of those who will walk this road and to help them carry the incredible weight that burdens empty arms. We are embarking on building a birthing + bereavement suite at Genesis East to honor our daughter, Ada Marie. And my sweet friend’s son, Brayden. And I carry Eva Katherine with me. And Beau. And Leo. And Oliver and Wilbur. And Emma. And John Paul. And Bianca and Aster. And Jenner. And Jared. And Owen. And Gemma. And Noah. And Houston. And many, many more babies that have left us on this side of the veil. I walk so proudly with their brave mamas who have shared their journey with me and who have showed me the depth of a mother’s love.

If you would like to join us in this mission of bringing light and love to those dealing with an unimaginable loss, please consider donating through No Foot Too Small for the birthing + bereavement suite at Genesis.

 Thank you to all who have loved us and who loved Ada Marie. Please hold her in your heart and remember our sweet girl who was so very loved. She adorned our lives during her short stay here, but the gift of her life and the adornment she brings will hopefully be far reaching and long lasting for those who are cared for in the birthing + bereavement suite.

Please join us on Sunday June 30th as we celebrate Ada and launch the partnership of Genesis and No Foot Too Small to build our Birthing + Bereavement Suite.