Claire's Story
Claire was born in January 2022 in Salt Lake City, Utah. Within seconds of being born, she was passed through a window into a ICU-type room where she was immediately intubated and prepared for transport to Primary Children’s cardiac ICU. Before Claire was born we found out that she had a condition called Heterotaxy – a condition where her internal organs were abnormally arranged in her chest and abdomen. Most significantly she had seven major heart defects. Instead of her heart having a left and right anatomy, it more closely resembled two right sides put together. At five hours old she had a stent placed in her heart that allowed her to to get sufficient blood flow to her lungs.
Claire was able to go home and was monitored closely. When she was 4 months old, she went into unexplained respiratory failure after a trip to the cath lab. That was the first time we learned that Claire had significant airway issues. She was in the hospital for 30 days, and came home with several respiratory medications and airway clearance equipment.
At 10 months old, Claire contracted Rhinovirus (common cold) and it landed her in the ICU. They realized she needed more blood flow to her lungs than she was getting, and she had hear first open-heart surgery to place a shunt in her heart. That hospital stay lasted another 30 days.
In February 2023, we took Claire to Boston from Utah for a specialized open-heart surgery called a Biventricular Repair. The plan was to repair all her defects at once - close the holes, reroute the blood flow to the proper places, etc. We were hopeful that it would be several years before Claire would need intervention on her heart again.
Claire was in the operating room for 12 hours. Her first few days of recovery were hard, but typical. She was able to get the breathing tube out, but after a few days started to struggle. Ten days post-op she had to be reintubated, and the next day her airways starting bleeding. In an effort to reduce the risk of bleeding, she was completely sedated and paralyzed for 5 weeks. During this time, her airways continued to bleed. She suffered two cardiac arrests and two placements on ECMO. She passed away in our arms on March 25, 2023.
One thing is certain - we did not fight alone. The incredible amount of love, support, and kindness by so many helped ease our burdens and brought smiles to our faces in times of challenge and difficulty. We had the unique experience of being thousands of miles from home for an extended period of time. We met many families in similar circumstances. It can be incredibly lonely and desperate at times. When Claire died, we knew we needed to give back in whatever way we can. It's our hope we can make a difference in the lives of those who are going through their own fight with Congenital Heart Disease and Heterotaxy.
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