I am the mother of Kyle Baca, who at age 14 was the victim of a “massive bilateral pulmonary embolism” (PE) on the morning of October 30, 2010.
I knew Kyle was sick, but I thought it was an upper respiratory infection at the time. He played football that season for his high school freshman team, ran track that summer, and participated in the Junior Olympic Regionals in Colorado. Kyle was diagnosed with pneumonia/pleurisy the previous month by his primary care physician, who put him on steroids and antibiotics for pneumonia. He got better, but still noticed that there were moments when he couldn’t catch his breath. We both thought his breathlessness was due to getting over pneumonia and/or tough football practices.
He also noticed that his shins hurt during track season. I thought his leg pain was because he was running more and changing his brand of track shoes many times. The possibility of a deep vein thrombosis (DVT) never crossed my mind. Kyle woke up on Oct 30th at 8:30 am and said he “couldn’t breathe.” He couldn’t stop coughing, his lips turned blue, and he couldn’t feel his arm.
He then collapsed in front of me. I started CPR, and had no idea what was happening in my son’s chest. Kyle and I were both fighting for his life. He was given adrenalin at the hospital 6 times in the 2.5 hour battle for his life, but they could not save him.
My son died at age 14. The doctors didn’t know what was wrong with my son, nor did I. I finally remembered that Kyle’s dad had been diagnosed with DVTs and had an inferior vena cava filter (IVF) to prevent PEs. My worst nightmare as a parent came true. I learned after Kyle’s death that he had Protein S deficiency, as does his father.
I didn’t realize in time that my son’s symptom were due to blood clots, probably starting from his first symptoms of shortness of breath, during the summer when he was running track, which was diagnosed as pneumonia. Instead, blood clots were forming in him, making their way into my son’s lungs, and slowly killing him. I didn’t know that the tendency to clot is hereditary and that blood clots in the lung mimic other illnesses such as pneumonia, upper respiratory infection, or pleurisy.
My nightmare taught me that it is wise to ask your child’s pediatrician whether testing is indicated when there is a history of blood clots in the birth family. The massive PE wasn’t diagnosed until autopsy. Kyle didn’t have any clots in his legs, but the pathologist who did his autopsy said the clots that blocked his lungs were massive and had developed in the area above his hip.
DVTs and PEs can go undiagnosed until autopsy, and although they are not common in children, they are still deadly. I know I didn’t realize this until it happened to my son. I have gotten through this whole nightmare with lots of prayers and lots of reading up on blood clotting disorders. The one thing that stands out is that this disorder is a silent killer and survivors of PEs are lucky. My lesson came at a huge cost in the death of my beloved son.