By: Ashley Loehr
We had a very normal, uneventful pregnancy until we found out at 20 weeks that our baby girl was not growing in the way that most babies do. We were devastated as the doctors seemed very worried and we went through a series of MFM (maternal fetal medicine) specialist appointments with two different large hospitals in the St. Louis area to find a second opinion or better news than what we were given. We were told our child would have a limited life if she was born alive. We were told she had a high risk of stillbirth and or would likely not live very long. I did all the research in the world that you can do as a mother to see if my child could live or what her life would be like, only to find out that not many children with Thanatophoric Dysplasia are currently living. This was the most devastating thing to learn as a mother. After praying and hoping for this baby, in a pandemic no less, we were going to lose our child.
After months of medical research and scans it became clear that we needed to celebrate Ava while we had time with her. This is just something we take for granted. Most normal pregnancies we celebrate, and we are joyful. But when you know, your baby is not going to live long it is so difficult to share. All the questions and reactions are difficult to endure. We were already grieving. Someone had recommended a book to me that helped us on this journey. We met with specialist regarding care for Ava when she was born. When the time came to meet Ava, we choose to seek comfort care for our daughter so she could have as much love and peace while she was with her family here on earth and to this day this was the best decision we could have made for our daughter.
As the pregnancy progressed. We found ways to include Ava in our everyday lives. Our young toddler would pick foods for mommy to eat so Ava could enjoy them. We would go to the park often for fresh air and I dreamed of Ava being able to play which was terribly painful as I watch my daughter play with my belly growing. We all read to her while she was inside me which I am so thankful for because I did not get to read to her when she was outside of my body breathing. We spent an evening taking maternity pictures that I cherish, and I wish I took more pictures of her while she was growing inside of me. My husband would talk to her every night just like we had with our other daughter while I was pregnant.
We named her almost immediately when we found out. I had planned to wait until she was born. But things change. We named her Ava which means “life or bird”, because we wanted her to live so badly. My husband picked out her middle name Halia which means “in remembrance of a loved one.” I wept as we agreed this would be her name. It was beautiful and perfect for our little girl.
The day came and it was time to meet Ava. April 17th, 2021 – which I picked because the day they chose was too soon for me to let her go even though I would never be ready. The day Ava was born was so terribly hard. I was happy and excited to meet my daughter, yet terrified and sad knowing that I would lose her shortly after. How do you prepare for that? Well, I will tell you — it doesn’t matter how much you read, listen to, etc. Nothing seems to prepare you for this kind of love and loss. We prayed with our priest, we hugged our loved ones and our toddler daughter and headed into the operating room. I almost had a panic attack watching them struggle to strap on the heart rate monitors to listen to Ava which was not in my plans; and to my surprise my doctor was sure to tell the nurse to just let it be and we would start. Once Ava was born, she cried, and it was the most beautiful cry I could have heard. I cried because I didn’t know If she would come out breathing. I was elated that our Ava came out alive and crying. I was nervous and excited. I didn’t know what to do because we didn’t know how much time we would get. They gave her oxygen and helped clean her up as we had the priest baptize her and my husband and I took turns holding her. I remember touching her face so gently and looking at her long brown hair just talking to her and telling her that I loved her. I was very shaken and cold from the medications for the anesthesia, so it was difficult for me to hold her. This was not easy for me because all I wanted was to hold her, but it was hard to do on an operating table.
When the operation was completed, we left to go to a bigger room with our family around to meet Ava. We have pictures of all the love that was surrounded around her. That’s all I ever wanted for her was to feel as much love as she could while she was here. I was holding her and touching her realizing she had started to fade. The nurse checked on her and explained that her heart rate was lowering quickly and promptly handed her back to me to spend as much time as I could. Not long after- although at the time it felt long, because time moved slow- the doctor and nurse called her time of death while my husband held her. We just heard what we knew was coming. Our daughter just died. We knew she likely was not going to live a long life. It doesn’t make it any less painful. Our daughter who was born breathing and crying and grunting just died. Died in my husband’s arms while the physician and nurse that delivered her listened to her heart slow and stop to tell us that she is no longer living. Our daughter is dead. All I can do is stare, cry, everything was a blur.
We spent the rest of the afternoon and evening with Ava. This time I cherish. We tried to memorize her. We took pictures with her and of her to remember her every day. She laid next to me, and I held her all that I could. The hardest part was giving her body to the nurse and saying our final goodbyes even though we had just met her. The nurse brought back the blanket without my child. No mother should have to do this.
We have pictures all over our house of Ava and our family. Her name is written on the wall in scrabble pieces like the rest of our family. We have her baby blanket locked away in a plastic bag that we hope keeps the smell forever, although we know it won’t. We have a beautiful wooden box that holds her flowers from her funeral, and so many things that remind us of her. It plays the song that was played at her funeral, Over the Rainbow, that now means so much to us. We have flowers and daisies that we planted alongside trees that were gifts to us. We get to watch these grow. We think every day how we included Ava in our day. Some days are harder than others. We were blessed to have Ava in the springtime and grieve in the summer months as we spent a lot of time in nature. Watching the birds and butterflies all summer long. Animals always have had a special place in my heart, but I could now explain to you what each animal means. Because when you lose your child, you look for every single sign that you can find that she is with you.
Sunlight, reading, and planting saved me this past summer. Along with the spunky 2 1/2 year old that kept mommy and daddy going every day. These are just some of the small things that helped us. We find something special to do on the 17th of every month. Sometimes it’s as simple as spending time together or visiting her grave. Most days were terribly hard to move through – this was and still is a traumatic time in our lives. There is anger, sadness, the ‘why our child,’ happiness, laughter, bitterness, and just any emotion you could think of sometimes in a 1-minute time frame. Somedays I could have forgotten to eat or shower. As time moves forward different things help us grieve. Somedays it helps to avoid the feelings and others it feels amazing to talk about Ava and just weep. We have learned through this season that keeping our daughter’s memory alive and that day that we got to meet her are so important to us. She is big part of our family. She is my our second daughter and a little sister to our 3-year-old, and soon to be a big sister to a baby boy. She is a grandchild, a niece, and cousin. Ava taught us the greatest thing that cannot be taken from you. LOVE. This is something no one can take from you, as I have said or read at this point, I’m not sure — Grief would not exist if it wasn’t for the love that we had for Ava.
About Ashley Loehr
Ashley resides in St. Louis, Missouri with her husband of five years. I am a mom to our soon-to-be three human children and brown lab mix. Our sweet Ava watches over her 3-year-old sister and our family in heaven and the little boy growing inside me. Ava passed away shortly after her birth on April 17th, 2021, due to a rare skeletal Dysplasia called Thanatophoric Dysplasia. Every day seems different and we try our best to move forward in this season of grief while we honor and keep Ava’s memory alive. It is challenging to be a mother to one child in heaven and a child on earth while hoping for the next healthy baby that is soon to come. Through sharing bits and pieces of our story throughout this process it has been healing but also has brought comfort to others and helps keep us saying Ava’s name.