Raleigh Eckert
Loss of daughter, Audrey to a rare heart defect
Hi Raleigh! Tell us, what’s your story?
I grew up in the Metro Detroit area in an extremely loving family. My parents were both teachers, so growing up we spent the entire summer in our secluded cabin along Lake Huron. It was idyllic. This began my love for spending time outdoors - camping, hiking, swimming, skiing - anything to be outside. I met my husband when we were 15 years old. We grew up together, and this foundation has been vital for surviving tragedy as a couple. We moved away to North Carolina for graduate school where I trained to become a physician assistant. I always felt called to medicine, to help people. I am a true empathy and enneagram type two through and through. My best friend calls me a canary, like the canary in the coal mine, for my ability to recognize other’s emotions. It was one of the best compliments I’ve ever received. I love my job and now work at an urgent care where I get to treat a variety of ages and ailments- it keeps me on my toes! No weird hidden talents but I was a very rough and tumble kind of kid. This led to six broken bones as a kid/young adult, countless ER visits for my poor mother, and possibly the start of my interest in medicine.
You told me that while pregnant, you found out that your daughter, Audrey had a rare heart defect. Can you share about that?
While living in North Carolina, my husband and I found out we were expecting our first child. The pregnancy was going really well, everything was perfect until the anatomy scan at 20 weeks. During the scan we found out we were expecting a girl! We were so excited. After that news however, I noticed the ultrasound technician spending a very long time in one particular area, her heart. When she left to get the doctor without explaining what was going on, my own heart sunk. I knew something was wrong.
After playing with the ultrasound herself, the doctor brought us into her office and told us she was worried our daughter had a heart defect. With my medical background, I knew the vast spectrum of disorders and silently prayed it would be one of the more manageable ones. She couldn’t tell us exactly what defect it was but scheduled us the next day with a pediatric cardiologist. This was another red flag for me. It’s hard to get into see a medical specialist, let alone the very next day. This was serious.
The next day our worst nightmares were confirmed. Our little girl had what was called hypoplastic left heart syndrome. This is a rare condition where the left side of the heart, the side that pumps blood throughout the body, is underdeveloped and therefor does not function properly. He discussed the different treatment options, multiple corrective surgeries in the first years of her life and even mentioned terminating the pregnancy. We had already fallen so in love with this little girl and were determined to do whatever we could for her. This led to multiple trips to Duke University Hospital and University of Michigan CS Mott Children’s Hospital for surgical consults. We ultimately decided her best chances were with the team at CS Mott, and for us to move back home to be closer to our families. In March 2020 during the early beginnings of the covid19 pandemic we quit our jobs, sold our home, moved in with my parents and essentially uprooted our lives to acquire the best care for Audrey. We chose her name based on its meaning, noble strength, in an attempt to prepare her for the long road ahead.
Her diagnosis began our grief journey. Initially we were so concerned with what her life would look like, we mourned the loss of a “normal” childhood for her and future for our family. Would she have cognitive impairments? Would she ever be able to play sports? Would she be able to live independently? The doctors gave us hope, citing the many children that were now growing older and living longer. However, I now believe they were the exception and not the rule. We were so concerned about her future because the alternative, not surviving, was unthinkable.
“I felt a bit like a failure in that my body, our genes together, couldn’t form properly or prevent that moment from happening. If I could have switched spots with her, I would have every single time.”
Audrey had several surgeries before she passed away, several weeks after she was born. What was that time like for you?
My husband and I are both very logical, goal-oriented people. We studied the three-step surgical process Audrey would undergo. We met with her surgeon who gave us diagrams and pamphlets discussing what to expect. We made our own sketches, and my husband filled a notebook with questions and answers. Logically, we knew the process backward and forward. But you can never prepare for the sight of your 5-day old daughter being wheeled away for surgery. Your heart stops and you wonder if you’re doing the right thing for your child. I truly felt like they were carrying away my own heart. I felt a bit like a failure in that my body, our genes together, couldn’t form properly or prevent that moment from happening. If I could have switched spots with her, I would have every single time. You can’t prepare for the agonizing 6-hour wait during the surgery. It was torture. And throw post-partum hormones into the mix and healing from a cesarean section. It was a terrible time.
What made it worst of all was CS Mott’s one parent rule. Due to the pandemic, we were not able to visit Audrey together. You had to choose one parent to be the caregiver and they would remain the primary parent for 7 days until you could switch if you wanted. Because of my recovery, my husband took the primary parent roll initially. The five days leading up to her surgery, when she was most alert and the only time we could physically hold her, I was only able to see her the day I delivered her, the next day while I was still inpatient, and the morning of her first surgery. On surgery days we were granted exemptions and allowed to both see her. The morning of her first surgery there were multiple delays, so we enjoyed 5 glorious hours of snuggling and spending time together just the three of us. It was one of the best days of my life. We were also not allowed to have family members sit with us while we waited for surgical updates. It felt so cruel that we moved mountains to be closer to our support system only to have them banned from being physically present.
Can you share a little about the day Audrey died?
Audrey did not recover from her first major surgery, the Norwood procedure. She had two subsequent surgeries to try to improve the weakened heart valves with minimal improvement. She remained intubated on many machines keeping her alive. Unfortunately Audrey was not a good candidate for heart transplant. My husband and I met with the palliative care team which was an incredible experience for us both. They taught us that there is a difference between extending life and prolonging death. We decided to undergo one last ECMO trial, a process that would test her heart's reliance upon the machines, and let her body tell us what it needed. The test showed she was unable to survive without the ECMO machine and we took this as a sign from her telling us it was time. We listened to Audrey and let her guide our decision.
The following day preparations were made for her to be moved to a special private room. She remained on ECMO but was removed from other machines which allowed us to better hold her hands and kiss her sweet forehead. The palliative care team helped us figure out what was most important to us on her last two days alive. She was baptized by the hospital chaplain. We took impressions of her tiny feet, painted handprints, and cut a lock of her hair. Her grandparents came to meet her. They were not able to hold her, but they got to kiss her forehead and read her stories. It was so heartbreakingly beautiful watching them simultaneously meet her and say goodbye.
On June 6th my husband and I woke before sunrise, picked up coffee and bagels from the hospital Einstein's like we had been doing for the past three weeks. We ate our breakfast with our beautiful girl, telling her how proud we were to be her parents. She was and always will be the strongest person I've ever met. Her care team, her ECMO technicians and her nurses Emily and Amber, switched their shifts around so that they could be there that day for her and for us. They had become our family and it meant so much to us that they were there. They rearranged all the furniture in the special room and the ECMO machine so that we could safely and comfortably hold Audrey. This was the first time we had held her since the Norwood procedure. It was such a beautiful gift to hold her again. The day passed so slowly and so quickly at the same time. Because we couldn't hold her previously, we had started reading aloud to her as a way of letting her know we were there. It began initially with board books, but they were so short and we had so much time to pass. I decided after the first week to start reading from the illustrated version of Harry Potter and the Sorcerer's Stone. I never thought we'd make it through the entire book, but we did. And as they were turning off the ECMO machine I held Audrey in my arms while my husband read the last chapter. You never picture yourself outliving your child. But Audrey's death was calm, peaceful and she was surrounded by the people who loved her most in her short 19 days. I don't think I'd ask for anything more in regards to the actual day. She wasn't scared, she didn't know pain, and she was back in her parent's arms.
How did you cope in the immediate weeks after Audrey’s death?
Immediately after we returned home from the hospital with an empty car seat, we picked up our dog Mollie and drove to my family’s cottage. After briefly checking in with our parents to let them know where we were, we unplugged and spent an entire week sleeping, crying, drinking, and leaning on each other. During this time nature was my salve. Being surrounded by nothing but trees and the lake allowed me to feel her presence. The outdoors is still where I most feel her spirit.
I was fortunate in that we were living with my parents at the time, and I did not have a job to rush back to. (We had assumed Audrey would need around the clock medical care and I had planned to take a break from medicine for a few years to care for her until she was more stable). So, I used this time to focus on myself. I sat with every emotion I felt. I let it wash over me rather than push it aside as I may have done in the past. I cried when I wanted to cry. And screamed when I needed to scream. I surrounded myself with people that made me feel safe, and who loved Audrey. After a few months, my husband and I saw a grief therapist. She was incredibly helpful. Through her we learned to articulate our different grief styles and our needs, and Audrey’s death brought us closer together rather than pushed us apart.
Lastly, I found comfort in working with my hands and getting creative. I channeled my old scrapbook skills from back in high school and created the most beautiful baby book for Audrey. It took me weeks and I spent way more on stickers and paper than I meant to, but I was able to capture all the memories and photos in one place. It is one of my most cherished possessions, the thing I’d grab first in a fire. I also jumped into the DIY craze. I started with a piece of furniture a neighbor threw out, a dining room table. I stripped it, sanded it, painted and stained it. I remember listening to podcasts and the Hamilton soundtrack while I worked tirelessly for hours in my parent’s garage. Once we moved out of my parent’s house, I then was able to tackle our new fixer upper. With the help of my mom and sister, I repainted the entire downstairs over the course of a few months. It felt wonderful to be creative and productive again. I also think it was the first time since she’d died that I was excited about the future. I imagined little footsteps running down the stairs and Christmases spent in front of the fireplace. I stopped wishing I was living in the past, back when she was alive.
We are in this very unique time where so many people are being forced to grieve while in isolation. How has the pandemic affected you in terms of your loss?
The pandemic has been a blessing and a curse for my grief. I mentioned how it stole time from Audrey. My sister and brother never got to meet her. When we stopped her ECMO, we were only allowed six visitors to meet her and say goodbye. She met her grandparents for a few brief hours before she died. I will never forget the time it stole from our family. However, at times the pandemic felt protective. I was able to use it as a crutch for a long while, surrounding myself with only a select group of people. I leaned into my social anxiety as long as I needed to. I didn’t have to fend off well-meaning visitors dropping off casseroles. I didn’t have to listen to unsolicited advice about how there’s plenty of time for me to have more children in the future. But I also missed out on a supportive group. I think I would have benefited from group therapy, which was not an option at the time. Instead, I looked to social media to find other loss parents and grievers. They made me feel so much less alone.
What was a specific low point or struggle you experienced?
After Audrey died, I struggled with seeing other families with their children. As a 31-year-old woman it felt like everyone I knew was getting pregnant or having a baby. It didn’t seem fair. I had put in the work, nine months of hell on my body, a surgical delivery, the trauma of three weeks living in the hospital, and only memories to show for it. I also struggled with my faith during this time. I was raised to believe that good things happen to good people. I thought I was a good person and felt like I was being punished for something. I couldn’t understand how after all that I had been through, how I was expected to keep living, keep smiling, keep finding happiness even though she was gone.
How did you manage to find joy in those moments?
I blocked or muted just about every person on social media I knew that was pregnant or had young children. I started closely following other loss moms and reaching out sharing our stories. I spent hours and hours creating the most spectacular scrapbook for Audrey’s baby book, determined not to forget a single memory. And we spent the summer on the water. My dad’s retirement and lifelong dream of owning a boat coincided perfectly with Audrey’s death, and it saved us. My husband and I spent almost the entire summer on the water fishing, swimming, and just talking about our daughter. Every moment we could, we escaped on the boat.
How has that loss affected how you live your life today?
Professionally, I am a much better medical provider. I now know what it’s like to be on the receiving end of bad medical updates and can empathize so much better. Unfortunately, we have all been impacted by loss during this pandemic time, so I have related to my patients in a way I never had before Audrey.
Personally, my loss has made me more outspoken and a better advocate for myself. I am a recovering people pleaser. Before Audrey I bent over backwards to accommodate others. My loss has taught me to value my own needs. There were a few instances after our loss that I did not set boundaries, and it taught me how important there are. I now set boundaries because I need to and I’m proud of myself for it.
What do you want others to know about the loss of a child?
I want them to know its survivable and it happens more often than we’d like to imagine. It used to be one of my greatest fears, losing a child. Now that it has happened, I am living proof that not only can a parent continue to live life, but they can find joy again.
How can a person best be there to support someone struggling with grief and loss?
The pandemic makes it hard to be there in person. Show your person you’re thinking of them by checking in with a text or phone call or email. They might not answer or feel like talking but keep trying. The effort is what matters.
Remember the important dates, their birthday, the day they died. A simple “thinking of you” text goes so far on these days. If it is a child loss, use their child’s name. Hearing people say Audrey’s name aloud gives me the greatest joy. If you’re able to be there physically just sit with them. My sister was really good at this. She knew that oftentimes I didn’t want to do anything or talk, but I also didn’t want to be alone. It was a great comfort.
Any resources that have been helpful for you - on either grief or cancer?
Everything social media and/or written by Zoe Clark-Coates
Held by Abbey Wedgeworth
Modern Loss by Rebecca Soffer and Gabrielle Birkner
Kate Bowler podcast - Everything Happens
No Cure for Being Human by Kate Bowler
What brings you joy now?
My weekly bible study with my cousins which we began shortly after Audrey died in summer 2020. We have been meeting weekly since then via zoom. The weekly chats fill my heart and I have learned to reframe faith in the light of my loss.
DIY home projects are still bringing joy. Being Up North at the cottage, and sunshine on a chilly Michigan day.
We welcomed Audrey’s little brother, Albert in December 2021. He has brought so much joy to our lives. He resembles his sister and makes some of her same facial expressions! My husband and I like to picture Albert spending time in Heaven with Audrey before he was born. We say he was handpicked by her to be our son.
Anything else you’d like readers to know?
In honor of Audrey we started The Audrey Eckert Foundation to raise awareness and support for congenital heart defects and families undergoing long term care at CS Mott. The foundation has been our way of keeping her memory alive and our community has been really supportive. It has also allowed us to connect with other heart defect and loss families around the country. If anyone wants to read more about Audrey’s journey specifically, I kept a blog with updates during her life. Audrey's Adventure.
Want to learn more about Raleigh and her story? Check out her blog, Audrey’s Adventure or follow her on Instagram @Raleighinthemitten or @theaudreyeckertfoundation.