By Betty Mertens,
Better Because of Ella
On April 4th, 2016, we were overjoyed to welcome our beautiful daughter Ella into the world. In her first 12 months, Ella flourished, teaching us everything we needed to know about being first-time parents. She learned how to crawl and say her favorite words “Dada” and “What’s that?” She loved playing peekaboo, balancing on her daddy’s hand, and pretending like she could read. Ella was also a little jet-setter, accompanying us on trips to Portland, Destin, Las Vegas, Minneapolis, Branson, and many other destinations. We were a happy little family.
It wasn’t until April of 2017 that Ella started showing any signs of sickness. At first, she just seemed to have a cold. We took her into the hospital because we noticed she was wheezing, but we had no idea that her noisy breathing was a symptom of a much bigger problem. Not long after Easter, Ella was admitted to St. Louis Children’s Hospital. She was in heart failure. This news came completely out of left field, especially because no history of heart disease existed in either of our families. The doctors thought it was brought on by a virus. After one tough week in the hospital, Ella’s condition seemed to improve. She was released to come home. She still had obstacles to overcome, but everyone thought the worst was over. We had weekly check-ups following her release, and Ella seemed to be progressing well. The tests suggested her health was improving.
We woke up on May 15th, my husband Kyle’s 30th Birthday, and never imagined that it would be the day we would lose our daughter. Our plan was to leave for a tropical vacation the following day, so we were each tying up loose ends at work when we got the call from daycare that Ella’s lips were turning blue. In a panic, we rushed to meet her in the ER, where we were told that she would need to be transferred via helicopter to St. Louis Children’s Hospital.
Knowing there was only room for one passenger in the helicopter with Ella, we decided it would be best for Kyle to drive to Children’s Hospital. We imagined the timing would work out for him to arrive around the same time as the chopper, so he kissed Ella goodbye and left. Neither of us realized those would be his final moments with her.
As Ella and I waited for the chopper, she seemed so helpless and scared. I tried my best to comfort her, promising her she could have more of the tater tots she loved at Children’s Hospital. I told her how brave she was and how I would take lots of pictures of her in the helicopter so she could show all her friends at daycare.
When the paramedics arrived with the chopper, they informed me that Ella’s breathing tube needed to be adjusted. They said it would be uncomfortable for her and that the helicopter would be very loud, so they wanted to sedate her a little to keep her calm. I held her hand as her eyes closed and they started working on her breathing tube. It was then that she flat lined.
Chaos broke out as the medics worked to resuscitate her. I called Kyle via Facetime so he could see what was happening. Even in those moments I fully expected them to bring her back. I handed my phone to a nurse so Kyle could continue to see what was going on while I moved to the head of her bed so I could sing her favorite song, “Que Sera Sera,” over her.
I don’t even remember when they stopped the compressions. It wasn’t until everyone had stepped back away from the bed that I stopped singing. My initial response was to try and wake myself up. I was certain that this was a nightmare, and if I could snap out of it I would find Ella sleeping peacefully in her crib. Instead, reality crashed against me like a tidal wave as I stared at my husband’s tormented face via FaceTime. There was no waking up from this. She was gone.
They let me hold her as I waited for Kyle to return. I just sat there, pushing my thumb into her little palm so I could feel her tiny fingers curl around it. I thought about all the plans we had envisioned for her – all the memories we would never get to make. I thought about how Kyle would never get to walk her down the aisle. I thought about how we would never get to see the beautiful woman she would become.
Her death came as a complete shock to everyone, including the medical professionals. It wasn’t until six weeks later that results from a genetic test revealed that Ella had a very rare heart mutation that led to dilated cardiomyopathy, which means her heart became too large to function effectively. Over the coming months Kyle and I learned much more about how common genetic heart conditions are, and that they are the leading cause of birth defect-associated infant illness and death.
We wanted to protect other families from what we had experienced, so we established an Endowment Fund in Ella’s name to help support pediatric heart research. The beauty of an endowment fund is that once it meets its minimum target, the money is invested, and the returns are used to support the cause. This means that Ella’s fund will continue to provide money for pediatric heart research and her legacy will live on indefinitely.
Even through all the pain, I can honestly say my life is better because of Ella. I am a stronger person, a better parent, my marriage has been refined through fire, and I am now uniquely equipped to support other grieving people. Ella helped me see with fresh perspective what is truly important in life. No amount of time with my daughter ever would have been enough, but she is still with me, and I now have a front row seat to see how her legacy is impacting the world.