One of the best parts of my job is telling other people’s stories. In my nearly 13 years at Akron Children’s Hospital, I’ve had the privilege of interviewing dozens of patients, families, doctors and employees, and then sharing their courageous and inspiring stories. Never did I think I would have my own medical miracle story to tell. That is, until last May when my then 15-year-old daughter, Aly, was suddenly struck by a life-threatening, bacterial infection, and our own survival battle began.
Knowing my daughter, I shouldn’t have been surprised that nothing went according to the textbooks.
The first signs appeared the week before her admission to our pediatric intensive care unit (PICU). Aly had been sick with gastrointestinal problems, and during that week, we made multiple trips to the ER and her primary care doctor in adolescent medicine, Nneka Holder. Aside from needing IV fluids to treat her for dehydration during one visit, however, nothing set off alarms. Her lab results were normal. Her radiology studies were normal. And just as I was starting to chalk it up to my daughter’s tendency to be a bit of a hypochondriac, she woke up Friday morning and felt all better. Just in time for the prom.
The Monday following prom, Aly said she didn’t feel well. As a mother who has had to talk to her daughter many times about the “little boy who cried wolf,” I figured she was just exaggerating her symptoms to get out of going to school. It wouldn’t have been the first time. Her dad and I told her that she had to go to school. After all, if she was well enough to go to prom and after-prom, she was definitely well enough to go to school. Grudgingly, she headed off to school.
The drama begins
About mid-morning, the school nurse called to tell me that Aly had fainted in drama class. How appropriate that she would faint on stage! I immediately became annoyed, thinking that she was just trying to get back at me for making her go to school. Even the school nurse questioned her fainting episode because Aly didn’t show the normal signs of someone who had just fainted. When you faint, your vital signs (i.e., blood pressure, pulse) typically drop, but Aly’s didn’t. Fortunately, her dad was working from home that day and went to pick her up. Although Aly’s dad, Ben, and I are divorced, we still work as a team when it comes to raising Aly.
A couple hours later Ben called to say Aly was really sick. When I drove to his house to check on her, I was stunned to see how quickly her health had deteriorated. She was puking up bile and her face had a greenish pallor.
We rushed her to the ER and the ER staff immediately took her to an exam room and started assessing her. At this point, not only was she green, but she was experiencing spontaneous bleeding from her toenail beds. After waiting anxiously for word of what was going on, ER doctor Emily Scott entered our exam room and broke the news.
My daughter’s kidneys were failing and her blood platelet count had plummeted to an astonishing 11,000. (Normal is 150,000 to 400,000). I have never been so terrified in my life. I tried to focus on what the doctor was saying, but I couldn’t stop getting stuck on words like “kidney failure,” “dialysis,” and “anemia.” I also was overcome by extreme guilt that, as her mother, I didn’t realize how incredibly sick she was. Why didn’t I believe her? Why did I assume she was just being dramatic? My head was spinning as the doctor talked about dialysis and a rare condition called hemolytic uremic syndrome (HUS).
After she left the room, I quickly booted up my laptop and “googled” the disease. What I found sent shivers down my spine. HUS is typically caused by e.coli or other bacteria, and while Medlineplus revealed that “more than half of patients will recover,” I couldn’t stop focusing on the bone-chilling words, “…and it can cause death.”