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Intense Physical Exertion: Childbirth

jenh Message
11 Apr 2021, 07:05 PM

Hello everyone! I'm new here. I was just diagnosed in February after what was probably a third attack (this one brought on by the Moderna COVID vaccine). The first two attacks were misdiagnosed as anaphalatic shock (amniotic fluid embolis) and septic shock (no known infection, though I had the common cold virus). Both times the medical teams called me a "medical mystery" and a "miracle" for having survived.

The first attack happened minutes after childbirth. I suddently couldn't breathe and went tachacardic and hypotensive. Then the blood just starting pouring out of my body. Over the next several hours, any replacement fluids or blood products continued to leak out of me. When I got my SCLS diagnosis I called my ob-gyn right away. She felt a huge sense of relief that there was finally an explanation that made sense. She said, once again, that nothing that should have stopped my bleeding worked and they never knew why.

Dr. Druey at NIH had never heard of anyone having an attack after childbirth, which, if you've given birth, is extreme physical exertion! Did anyone here experience anything like what I did? Thank you!

ShaunaHatch Message
13 Apr 2021, 09:07 PM

My daughter was 18 and had an extreme reaction following a surgery to replace her internal cardioverter defibrillator and an attempt to remove some old leads. She had been through about 20 other surgeries, and the only ones that had reactions were ones that involved her internal cardioverter defibrillator. She had other symptoms not related to surgeries too, but her worst reations were to invasive surgeries. She still isn't diagnosed but I'm hoping that as the NIH gathers her medical records that they will be able to diagnose her. 

aporzeca Message
17 Apr 2021, 03:45 PM

Jenh and ShaunaHatch,

Welcome to our SCLS community!

First to ShaunaHatch, I'm so sorry to hear about your daughter's passing at such a young age -- regardless of the cause.  I hope that you do get clarity about what went terribly wrong.  FYI, in the past 15 years I've been through more than 25 invasive surgeries (mostly related to muscle and nerve damage caused by my earliest episodes of SCLS, and specifically caused by the excessive quantity of fluids given to me during those early episodes), and none of them triggered in me an episode of SCLS, whether before or after going on an IVIG therapy.

Second to Jenh, to reinforce what Dr. Druey told you, I too have never heard or read about childbirth being the trigger of an episode of SCLS. However, ironically, the first identified case of what we now call SCLS, or Clarkson's Disease -- namely, the case described by Dr. Bayard Clarkson and colleagues in an article published in 1960 -- was about "a thirty-four year old white woman of Italian descent" in otherwise excellent health, who had had two uneventful, full-term, spontaneous baby deliveries at ages 29 and 31, and both of her children had survived and were doing well. However, she went on to have ten severe episodes and almost a dozen minor episodes during 1957-58 of what we would now recognize as SCLS that correlated with her menstrual cycle -- either a couple of days before or else during or right after. 

Dr. Clarkson and colleagues conducted every kind of laboratory and other studies on her, and tried everything to prevent, stop or minimize her episodes, going so far as performing a hysterectomy and later removing her ovaries, but nothing worked, and she eventually died during a severe episode in January 1959.  The only constructive thing they could do in her honor was to write and publish a detailed report on her case and everything that they had done, in order to warn future doctors to be on the lookout for this kind of mysterious illness.

When I finally looked up and met Dr. Clarkson in person back in 2011 -- he was in his mid-80s then, and it was in his office because he was still doing medical research, though on cancers -- he remembered this patient as if this had all happened the day before, rather than more than 5 decades before.  He was almost moved to tears telling me how frustrated he had been all this time, and how guilty he had felt, that he had not been able to save her life.  And when I told him what had been learned about SCLS since 1960, and how the illness was now named in his honor, he almost fell off his chair!  He had no idea, because he had never encountered another patient with those same symptoms, so he didn't even know that it was referred to as SCLS, never mind as Clarkson's!

If you want to read that pioneering article, write to me at and I will send it to you.


ShaunaHatch Message
19 Apr 2021, 08:02 PM

Thank you Arturo! Your story about Dr. Clarkson is amazing! I will email you to get the article!
I'm pretty sure my daughter had SCLS. She had symptoms throughout her life, even before she was born, that no one could ever explain.
I hope to get answers someday!