Congenital heart disease doesn’t run in our family. My brother is a Pediatric Cardiac Anesthesiologist and I have always loved hearing his stories about his different heart cases; children who got transplants, the ones who received life-saving surgeries, the ones with just simple repairs, and the ones who fought hard for a chance at life. At the time, they were just stories. You know… the stories that happen to “other people”. However, a few years down the road, my brother would be the best resource for me as I learned that my third child was going to be born with heart failure.
It didn’t initially start out that dramatic. At the 20 week ultrasound, the tech found a possible Coarctation of the Aorta. Our world was shattered. Then as the weeks ensued, more and more issues were found with our baby; VSD, ASD, and ultimately, minimal function in both ventricles: cardiomyopathy. At the time, we thought, OK, so her heart doesn’t squeeze, can’t we just give her medicine to get it up and running? Wrong. Her heart was so incredibly sick that the only hope for her to have a chance at life would be by receiving a heart transplant, and she would need to be listed for one as soon as she was born… assuming, of course, that she lives through birth.
On June 25, 2020, our Nora was born. She was 7 lbs., 6 oz. and came out with lungs blaring. I’ve never been so happy to hear a screaming baby. She was ALIVE. A miracle. I only got to see her for seconds before she was passed through the window in our room that directly connected to the NICU. My husband and I looked at each other with tears in our eyes. “She’s here. She made it. She looks so good. How can her heart be so sick?”
She was soon walked over the little bridge that connects the University Hospital to the Children’s Hospital. The Cardiac ICU had been hearing about Nora for weeks before she was born, and were so amazed to see how good she looked after delivery. She was quickly listed as 1A on the heart transplant list. On day 6 of life, she received a Berlin Heart. Her surgeon performed a newer version of this surgery where he made her single ventricle, and then placed the ventricular assist device. She had received an “SVAD”— a Single Ventricle Assist Device. This is extremely new territory at Primary Children’s Hospital. Nora was the 4th child at the hospital to ever receive this new way of keeping children alive until transplant. Nora had a lot of ups and downs as she waited for a donor heart to become available because she was really just working with half a heart that was being mechanically supported.
She loved sucking on her pacifier. It was a huge comfort to her in the beginning, but as more and more issues arose, Nora let everyone know that she needed more support, especially with oxygen. She soon lost the ability to suck on a pacifier as she spent nearly 3 months with a CPAP mask—what we called the “scuba mask”—on her face. While waiting for a heart, she had many more surgeries and procedures performed. I lost track of what each of the scars represented on her tiny body. What brought her comfort was the feeling of anything soft near her face. She loved feeling the ears of her bunny and the softness of her blankets. She needed a lot of support but continued to be the happiest baby in the CICU, giving everyone smiles and being so playful, while also continuing to fight an uphill battle. We often joked that Nora was the mayor of the CICU. People couldn’t help but be drawn to her and her smiles. She was a bright light in that place.
After almost 5 months of waiting, Nora received an offer for a donor heart, and we were elated. Nora had been doing so well—the heart came at her “healthiest time”. The light at the end of the tunnel had come. This was it. Nora was going to get her second chance.
The surgery started at midnight. We got our first update around 8 AM. Things were going well and the heart had been placed. More updates came and things continued to be going well. Then we stopped getting updates. Hours passed, and finally 14 hours after her surgery started, her surgeon walked into the waiting room. With frustration in his eyes, he let us know that the surgery didn’t go as well as he hoped. Nora lost a lot of blood, and her new heart had stiffened from all the trauma. She would be placed on ECMO, a mode of life-support to try to restore function to her heart.
Did we hear him correctly? How was this happening? She was doing so well.
Nora continued to bleed for 20 hours. When we were finally able to go to her room, we saw her on life support and on dialysis as her kidneys had also been injured. It was a sight to see her so incredibly sick when the night before she looked so good.
However, as the days passed, Nora started getting better. Her heart function improved, she was taken off life-support, her breathing tube was removed, she was smiling and alert. She even got a little stint in the “dungeon” of the Pediatric ICU as one of her caretakers had tested positive for COVID-19, and Nora needed to go into isolation. But even though it all, she was as happy as could be—not realizing all that she had just endured.
We got 6 more beautiful weeks with her after her heart transplant—a time that I will never forget. Nora conquered so much throughout her short life. Her kidneys never did come back to function, and her dialysis stopped working altogether. It was clear that she was done with her fight. But even in the hours before she passed, she was still smiling, almost as if she were letting us know that she was going to be OK. Nora taught me so much. Her innocence, fight, and drive are what get me out of bed each morning. My 4-year-old asks me often when she will need a new heart like her sister Nora. It’s a powerful thing for me to teach her about what a gift it is that we have perfectly working hearts, and how much we can learn from Nora and her fight to get a chance to have what we have.
We miss Nora so deeply and are always so proud to tell her story. She is our warrior. Our hero. Our smiling Nora.