The Story of Our Daughter, Elizabeth Grace Anderson
I found out I was pregnant in August of 2022. We had been trying for a couple of months and we were overjoyed to have our third baby complete our family. I took a pregnancy test after my school’s open house and told my husband by setting the test on his recliner. He didn’t notice the test and sat right on top of it!
At 11 weeks I went in for an ultrasound with my mfm doctor. With this being my third baby and my husband having a demanding job, I went to most appointments alone. The ultrasound tech was quiet during the scan. When she left to share the scan with the doctor, I waited and waited. My stomach started to turn when I realized how long I had been waiting. In my heart I just knew something wasn’t right.
The doctor came in and said, “I’m very concerned about the health of your baby.” She said that the baby’s legs didn’t develop properly and that this could signal the presence of other significant anomalies. Her best guess was that the baby had sacral agenesis/caudal regression syndrome. She printed out medical journals about SA/CRS and reviewed the basic details with me. She assumed that the baby was likely missing part of his/her spine, which could impact his/her ability to walk, use the bathroom, have properly formed genitals, etc. She said termination of the pregnancy was an option if I wanted to consider it.
The tears poured out of me. I remember sitting in the doctor’s office saying “I tried my best, I’m so sorry.” over and over again. I walked out through the office’s back door and felt like the world had stopped spinning. I called my husband, hysterical, and told him he needed to come home.
Over the next few days, my husband and I cried more than we’d ever had. Without knowing much about SA/CRS, we were scared our child would live a very painful and difficult life. We watched documentaries about SA/CRS, and youtube videos of individuals living with SA/CRS. Our mfm doctor consulted doctors who specialize in care for individuals with this diagnosis, and shared how resilient, happy and fulfilled many of them are. We saw this to be true with the videos and research we did on our own too. We were scared, but decided that termination of pregnancy wasn’t appropriate for us.
A week later we went to another mfm practice for a second opinion. They did an ultrasound and found several more anomalies. They believed the baby had kidney issues, a curved arm, and the nuchal fold suggested a genetic condition was present. This time, the doctor came in and said “I believe your baby has trisomy 18, which is incompatible with life. I’ve never been wrong before.” He told us we needed to do genetic testing and that we could terminate the pregnancy or wait for the baby to pass on its own. To say we were crushed was an understatement.
While we waited to have CVS testing done, I did a sneak peek gender reveal blood test and found out we were expecting our first girl. I had always dreamed of having a daughter and felt like she was put into my life for a reason. We were holding onto hope that his theory of trisomy 18 was wrong.
Waiting for CVS testing to come back felt like the longest wait of our lives. We went through three rounds of testing, each taking 1-2 weeks for results. By the end of testing, no genetic abnormalities were found. We truly couldn’t believe it! We felt like we were given a miracle.
We told our sons we were expecting and did a gender reveal at home with them and our parents. We put a pink smoke bomb inside of a pumpkin and celebrated with pink treats and goodies. Everyone was so excited to have the first granddaughter and niece.
Throughout the rest of my pregnancy we had appointment after appointment. At one point I was going in 3 times a week. Doctors were so perplexed by our little girl, Ellie, and every appointment seemed to draw a different hypothesis. One week we would hear the bottom part of her spine was missing, and the next we would hear that her spine was fully formed. One week doctors would be filled with fear and the next it seemed like everyone was hopeful.
We had a fetal MRI done, which found no issues other than short lower leg bones. I also had 3 fetal echos done, all of which found no major problems. We were so ready for our miracle baby girl and assumed she would just need a wheelchair or prosthetic legs to give her full access to the world.
In preparation for Ellie we decorated her nursery with a modern 70’s theme. I picked out the most unique things I could find, because she was our little unicorn. I went all out on the most girly baby clothes, quickly filling her closet and dresser with lots of pink and bows. I couldn’t believe my dream of having a little girl was finally coming true.
On April 11th, 2023 (38 weeks) my doctors decided it was time to deliver. The OR was filled with dozens of people- from my OB, to mfm doctors, to a whole NICU team. At 12:01 p.m. Elizabeth Grace was born. I got a glance of her from the operating table and was so relieved to hear her cries. She was more beautiful than I imagined.
Doctors kept Ellie to monitor her while I was taken to recovery. After a while the neonatologist came into the recovery room and said that Ellie had to be intubated and had a deformed airway. She would be taken to Akron Children’s main campus NICU. Before she left they wheeled her isolette next to me, and I touched her sweet little hand for the first time. My husband and I were so afraid and overwhelmed.
While I recovered in the hospital my husband and parents traveled from my hospital to Ellie’s and sent me photos and videos. I was desperate to get to her, and asked to be checked out after 24 hours.
Ellie’s time in the NICU was complex and traumatic. Doctors discovered that she had esophageal atresia and truncus arteriosus with a defective heart valve. Keeping Ellie stable was challenging, with her eventually requiring 2 nurses at all times. Multiple codes were called for her each day, and watching the dozens of staff that would swarm her room was terrifying.
After completing 3D scans of her heart, a team of Ellie’s doctors met with us to explain how sick she was. They told us that they had never seen a heart like Ellie’s, and even in research they couldn’t find a heart similar. They explained that Ellie’s heart would require surgery after surgery, likely needing them her entire life. To survive the first surgery would be challenging, but even if she did she would face hurdles her whole life. The doctors delicately told us they weren’t necessarily afraid of her dying, but afraid of what life would be like for her if she survived. They believed Ellie would never be medically stable enough to do things other kids do like go to school and be able to leave the house. They also believed she may never breathe on her own and would be in and out of the hospital continuously. Because of Ellie’s other medical needs, she wasn’t a candidate for a heart transplant. Her doctors urged us to consider choosing peace for her by allowing her to go to heaven.
My husband and I held our little girl in disbelief. She was the sweetest, most beautiful ray of sunshine. We wondered how all of this could be real and the emotional pain was indescribable. Not only was our little girl fighting for her life, but we were faced with the worst decision parents can possibly have. It felt like we were choosing between two versions of hell.
After a lot of prayer our hearts knew that Ellie deserved peace. We felt that we would rather live with the pain than have our little girl live with it. Our boys were able to spend time with her, showing her their toys and touching her little hands and toes. They were in awe of their sweet little sister. Ellie’s Aunt, Uncle, and three of her grandparents were also able to spend time with her. The photos we have of her with our family will be treasured forever.
On April 15th, 2023 Ellie gained her angel wings. We held her tight, kissed her thousands of times and sang “You are my sunshine.” When she passed, an overwhelming sense of joy and peace filled my soul. I have never experienced anything so profound, and deeply believe my heart was able to feel a glimpse of what heaven is like.
It has been difficult to navigate life without Ellie, and the large hole her death has left in our family. She will always be our daughter, and we will always include her as such. While I can’t say that time heals the wound of losing a child, time allows you to learn how to live with the pain one day at a time. I miss her more every day, and will always wonder what she would look like and what she would be doing if she were still here. My heart will long for the day I get to hold her again until it is my time to go to heaven too.
After two years and two chemical pregnancies later, we are expecting our rainbow baby GIRL in September 2025. Pregnancy has been waves of intense grief and overwhelming gratitude and hope. Each appointment and ultrasound is triggering but exciting. We have learned that grief and joy truly can coexist and are doing our best to take everything one day at a time.
It’s an honor and privilege to join hundreds of women across the world in wearing Journey for Jasmine’s rainbow skirt. Thank you for allowing me and our rainbow baby to be wrapped in the love of so many bereaved moms, angel babies and rainbow babies.
To every mom missing their baby and wishing for their rainbow, you are held close in my heart.
With hope and gratitude,
Allie Anderson
Photos taken by Olivia Sloan.
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