Ella's Story

Ella came into the world August 21, 2025. Shortly after being born, it was found that she had a heart murmur. Her doctor decided it would be best if she was transferred up to St. Mary's where she could be evaluated further. Once at St. Mary's, she had her first of many ECHO's done. This first ECHO showed that she had severe pulmonary stenosis and moderate aortic stenosis, along with a PDA. She spent 10 days in the NICU with the doctors monitoring the PDA closing and how her heart was functioning with the PDA closing. We were so terrified of what was going to happen and weren't even sure if Ella would be able to come home without having some type of procedure. Ella's cardiologist determined her numbers were good enough for her to come home. We were terrified to bring her home and something to happen while she was at home. Ella's first few weeks at home were filled with countless weight checks and appointments with her cardiologist. Many babies with CHD can struggle with gaining weight, so it was very critical for us to make sure she was getting the proper feedings. The cardiologists wanted her to be gaining weight as it would be beneficial during future procedures for her to be bigger. Her first procedure was a cardiac catheter on September 26, 2025. This procedure was looking to help with the narrowing on the pulmonary side and hopefully prevent the need for open heart surgery. Unfortunately, the placement of the narrowing prevented the balloon to open the valve as it was supposed to. This devastated us as we knew open heart surgery was going to be needed soon. In October 2025, we met with one of the surgeons who would perform the surgery. He really wanted to hold off on surgery as long as he could and thought based on her numbers from one of her recent ECHOs we could hold off on surgery until January 2026. This plan changed when we met with her cardiologist later in October. Her numbers for the flows got worse resulting in the pulmonary side getting slightly worse but the aortic side had moved from moderate to severe. After a discussion with fellow cardiologist in the state and the surgeons, it was decided that surgery needed to happen sooner rather than later. On November 25, 2025, Ella went in for open heart surgery. Once the surgery was done, we talked with the surgeons about how the surgery went. They were able to correct both stenosis, but she ended up having a moderate leaky aortic valve. We knew this meant another heart surgery would be needed to replace the valve. The next few days were filled with ups and downs of her recovery. Kyle had to go back to work and Kali was able to stay up in Madison and be with Ella. Everyday was mostly the same met with discussing the plan for the day, physical therapy, and respiratory therapy. However, everything changed the morning of December 4, 2025. We got a call at 3:02AM letting us know that Ella had a cardiac event. We were so scared she wasn't going to make it. Once the doctors got everything stable, we talked about what needed to happen and it was determined that her aortic valve needed to be replaced. We also found out that her cardiac event lasted for 47 minutes, but were unsure of what caused it. She went in for her second open heart surgery. After the surgery, they left her on ECMO to hopefully give her heart a break and let her body recover. The doctors were concerned about what the status of her brain from the cardiac event, but they didn't want to take her for imaging while on ECMO as imaging was on the adult side of the hospital. She was on ECMO for about a week before they thought her heart was in a good place to come off. Then at 4:07AM on December 16, 2025, we were notified that Ella had two more cardiac events. These only lasted between 4 and 6 minutes before they finally got her stable. The doctors put her back on ECMO. At this points that doctors were very concerned about her brain and decided imaging needed to be done. We learned about 2/3s of her brain was severely damaged and they couldn't guarantee what quality of life she was going to have. The doctors were already seeing her reaction to light wasn't happening. We ultimately decided her quality of life wasn't what we wanted and cause more burden on her to live like that. On December 20, 2025 Ella took her last breath surrounded by those that loved her so much. She was so loved and we her parents want to continue to honor her in any way we can.

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