Pregnancy-triggered aHUS can be sudden and dangerous

I was exhausted but couldn’t sleep. My insides felt as if an angry lava monster had its hot hands gripping and squeezing all within my torso. I was in so much pain that I was shivering. But my nurse assured me that this reaction was probably normal, given the spinal tap I’d received earlier that day to help me as my baby was delivered by cesarean section.

That night, a new and bubbly nurse came to check my vitals. I was glad she was African American, like myself, because I tend to worry about systemic racism in many medical settings. Black women in the U.S., for instance, are 2.6 times more likely than Caucasian women to die during childbirth.

“Honey, why are you still up?” my nurse asked. “You should be resting,”

I looked up, gave her a weak smile, and said, “I’m fine, just in pain a little, so I can’t sleep.” She stopped in her tracks and leaned in to look at me. She looked closely at my eyes and wiped sweat from my forehead. Unbeknownst to me, the whites of my eyes had a yellow hue — signs of kidney or liver issues.

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Descent into ‘chaos’

“OK, let’s check you out.” I could tell something wasn’t right by her tone. I’d had a spinal and C-section, so I hadn’t been allowed to get up and walk yet. She pulled back the blankets, audibly gasped, and stumbled back two steps. We made eye contact and her composure faltered for a second, causing her eyes to well up with tears. She took a deep breath and composed herself quickly.

“Please don’t freak out, but I’m going to get help,” she said before disappearing.

I looked down to see that I was covered in blood, so much that I’d bled through the mattress and it was dripping onto the floor under the bed. I didn’t know that part at the time, but I figured it out shortly after.

Within seconds my room descended into chaos. Four nurses came to tend to me while another called my doctor. They all froze, and I could see the blood drain from their faces. They were shocked and worried.

After cleaning me up, switching my beds and trying several medications, they got my bleeding under control. I needed two transfusions because of blood loss, and my eyes looked yellow for several days afterward. But I recovered. Oddly enough, no other exams or tests were done after this event, and I think they should’ve been. During my pregnancy, I had placenta previa, when the placenta is low in the uterus, so they assumed my bleeding was a complication of that.

Foreshadowing?

But I believe these were early-warning signs of atypical hemolytic uremic syndrome (aHUS), which almost killed me less then six years later. My second child came one year after my first premature birth via emergency C-section. I didn’t have severe bleeding as I did before, but my eyes and skin turned yellow and my baby’s did, too. Doctors said we both had jaundice, and the baby needed several incubator light sessions.

I had no idea that these events could’ve been inching me closer to death. I didn’t have my first official aHUS attack until 2020, after I had COVID-19. Despite nearly dying during two months in the intensive care unit and having my whole life changed dramatically, I’m fortunate that I didn’t have a full-blown attack as I gave birth because many aHUS patients’ first attack is triggered by childbirth.

Imagine having a healthy, normal pregnancy, only to suddenly turn to the worst near the end. Or imagine giving birth with no issues, but suddenly going into kidney failure minutes afterward. It sounds like something from a movie, but it happens to many aHUS patients. Even worse, the sudden onslaught of severe health issues has caused some aHUS patients to lose their babies. I cannot imagine that devastation.

Some pediatric patients are born with aHUS symptoms early in life. But for many adult patients, something triggers aHUS. That can be a major illness (like COVID-19 in my case) or a taxing medical event, such as surgery or pregnancy. Pregnancy-activated aHUS accounts for about 20% of aHUS cases, and it can cause grave issues.

I thank God every day that I didn’t have full blown aHUS attacks during my already complicated deliveries. But I think my various pregnancy and delivery complications were my body’s attempts to warn me. Many say that aHUS doesn’t have warning signs like mine before an initial attack, but I certainly feel I did.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.