Opinion: I almost died last year from a medical problem that was entirely preventable

Editor’s Note: Alice Paul Tapper, 15, is a high school sophomore in Washington, DC. She is the daughter of CNN’s Jake Tapper. The opinions expressed in this commentary are solely hers. View more opinions on CNN.

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I almost died around Thanksgiving last year, and it was entirely preventable.

It started one weekend in November 2021 with stomach cramping, a low fever, chills and vomiting. Soon it became clear I needed to go to the emergency room. By the time I got there, I had low blood pressure, an elevated heart rate, intense abdominal pain and a high white blood cell count.

I was given IV fluids to combat my dehydration, but I didn’t get better. The doctor and nurses didn’t know what was wrong and stood around me confused, as if they were waiting for me to tell them what to do. The sharp cramping pains and the throbbing feeling in my stomach got worse, so they transferred me to another hospital.

With guidance from my pediatrician, my parents told the doctors to check for appendicitis. But since I was tender all over my abdomen — not just on my right side — the doctors ruled it out. My parents kept pressing, so a doctor told me to stand up and jump. I could barely get an inch off the ground. The doctors concluded that what I had must be a viral infection and would eventually just go away.

It didn’t. I got sicker and my skin started turning a pale green. As Monday turned into Tuesday, I was only given Tylenol for my pain. My mom asked the doctors why I couldn’t get a sonogram to see what was happening inside my abdomen; they said it wasn’t needed. My dad asked why I couldn’t get antibiotics; the doctors said for a viral infection they could do more harm than good. My parents kept pushing for a gastroenterologist who might have more insight about my condition to evaluate me, but one never came.

I felt helpless. My condition wasn’t the only thing that alarmed me; so did the lack of recognition I received from the hospital. I was not being heard; when I described to the doctors how much pain I was in, they responded with condescending looks.

On Tuesday night, my dad went home to be with my brother, but it wasn’t long before my mom called him in tears. I was in agony and was only being treated with a heating pad. My dad got the phone number for the hospital administrator and begged for a gastroenterologist, for imaging — for anything. The phone call worked, and at the hospital administrator’s orders, I was finally taken to get an abdominal X-ray. The imaging showed this was no viral infection.

In the middle of the night, I was rushed to get an ultrasound that revealed I had a perforated appendix that was leaking a poisonous stream of bacteria throughout my internal organs. When I learned my diagnosis, I was almost relieved. At least the doctors now had a plan.

Finally, the surgical team took over. The next couple of hours were a blur. A CT scan was followed by emergency surgery; two laparoscopic drains were inserted in my body to get rid of the toxic leakage. I had sepsis and we would later learn I was going into hypovolemic shock — which can cause organs to stop working. That night was the scariest night of my life.

Once I was well enough to leave the ICU, I stayed in the hospital for another week, bedridden with uncomfortable drains in my body and horribly sharp cramping pains, for which I was given morphine. I could barely walk. I didn’t recognize the helpless, hunchbacked, green, exhausted girl I saw in the hospital mirror.

Why did this all go so horribly wrong?

My mom soon learned about research conducted by Dr. Prashant Mahajan, vice chair of Emergency Medicine and division chief of Pediatric Emergency Medicine at University of Michigan Health C.S. Mott Children’s Hospital. Mahajan’s research notes that, despite being the most common surgical emergency in children, appendicitis can be missed in up to 15% of children at initial presentation. Up to 15%!

This is because there are so many possible reasons for abdominal pain. Appendicitis can mimic several common conditions including constipation and acute gastroenteritis, which my hospital pediatricians mistakenly thought I had. According to Mahajan, up to half of appendicitis patients may not exhibit the classic signs of right lower quadrant pain, fever and vomiting.

Mahajan’s research also shows that appendicitis misdiagnoses are more likely in children under 5 — and in girls. I was disappointed but not surprised to learn that girls can be listened to and taken seriously less often.

Hospitals need to change the way they assess and diagnose appendicitis because it can frequently present in atypical ways. Anupam Kharbanda, pediatric emergency medicine doctor at Children’s Minnesota, came up with what’s called the pARC (pediatric Appendicitis Risk Calculator) score to help assess a child’s probability of appendicitis, using variables such as sex, age, duration of pain, pain migration, white blood cell count and more.

The pARC score could be an important piece of changing diagnostic practices and saving lives.

In 2018, a 5-year-old girl in England, Elspeth Moore, was sent home by a pediatrician even though she complained her stomach “felt like it was on fire.” The doctor diagnosed a viral infection. She died of peritonitis, sepsis and acute appendicitis two days later.

My story has a less tragic ending. Luckily, I wasn’t sent home without monitoring like Elspeth was, and I finally got the care I needed. Months after my first hospitalization, I had an appendectomy at a new hospital — Children’s Hospital of Philadelphia. My health has returned to normal. But I have a new mission to spread awareness about misdiagnoses of appendicitis — because what happened to Elspeth could have happened to me, too.

The X-ray machine was down the hall, the CT machine just a floor below, the sonogram machine just steps away and the antibiotics I needed were just one phone call away. But doctors didn’t utilize these tools to quickly diagnose and treat me and, as a result, I almost died. It breaks my heart to think about the boys and girls who don’t have parents who can get the phone number of the hospital administrator — who can’t make their voices break through.

I still can’t believe this happened to me — and I don’t want it to happen to anyone else.