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One of the challenges I have faced over the past 16 months is quieting all the questions that frequently fill my head.   Questions most of which don’t have answers.

  • Why me?  Or what did I do to deserve this?
  • Did I do something to cause this?
  • Could I have done something to prevent this?
  • Will this happen again?

…Just to name a few

I have spent hours and hours reading medical journals and anything else I could find on HELLP Syndrome seeking answers.  There are tons of theories and even more statistics, but at the end of the day they all say the same thing.  Because there is no known cause; there is no known way to prevent HELLP and the only treatment is to deliver as soon as possible.  How can this be, with so many advances in modern medicine that so little is known about this deadly condition?  {Yet another question}

As I researched, the question that really got under my skin was: why had I never heard of this before?  I read baby books and spent countless hours on baby websites, not once had I heard of HELLP Syndrome.   I was very annoyed when I went to the March of Dimes website and there was no mention of HELLP under pregnancy complications.  There moto is “Working together for stronger, healthier babies”.  (I am glad to report that as of April of 2012, it is now listed.  Not sure if it was due to my emails as I never got a reply, but regardless, glad it is listed now)

At times, I have felt even some in the medical industry don’t really know much about HELLP.  I say that not because of my OBGYN or my primary care doctor, in fact I have been very pleased with the care I have gotten from both of them.  But, over the past year, I have had to see countless doctors.  The first doctor that shocked me was a neurologist; I suffer from migraines and have seen various neurologists for many years.  He told me on several occasions he had never met anyone that had a case like mine; he had only ever read about it.   Months later I had to see a cardiologist, as were talking he had a nurse taking notes.  She stopped the conversation to say, I don’t know how to code this.  I don’t see HELLP as a condition in our system and I don’t know what it is.  He told her to put it under either PreEclampsia or Eclampsia and note it was HELLP.  At least he knew what category it would fall into.

The irony is while I have had doctors tell me they aren’t exceptional familiar with HELLP, every labor and delivery nurse I come across seems to feel they are an expert on the topic.  I say they feel they are an expert because it takes very little time talking with them to realize they usually are not.  I had one go as far as to tell me I should sue my doctor for missing my PreEclampsia and letting it get all the way to HELLP.  When I told her I never had PreE she said, “No, that is impossible.”  Sorry to tell her, it is very possible. My blood pressure was good until the day it all went wrong and I was not swollen at all.  I had another nurse tell me “She sees HELLP all the time, and whoever told me it was rare was wrong”.  No comment on that one.

But, as I mentioned earlier my main doctors have been great.  When I first saw my primary care doctor and told her what had happened, she asked me for my OBGYN’s info.  She promptly called her to discussed my case and asked if she could send over all of my records. She has gone to great lengths to educate herself on HELLP Syndrome.  And, any test she runs she sends over to my OBGYN.  As the patient I really appreciate this, it is nice to have your doctors on the same page and it prevents any unnecessary double tests. 

As I approached the one year post HELLP mark, my primary care doctor wanted to do a complete physical to make sure my body had recovered fully.  This would also start the process of me (and the doctors) determining if we would try for another baby.   In addition to the normal physical tests, she tested for various types of Thrombophilia.  She explained that my insurance may not cover these tests, since I had not had multiple miscarriages, but they only costs a few hundred dollars if not covered.  They tested me for both  Leiden Factor 5  and MTHFR .   

A few days later I received a call from my doctor.  The test results were in.  I tested positive for 2 variants of MTHFR and they were running an additional test to see if my homocysteine levels were affected, which they were not.  She explained about 30% of the population, including her, has at least one of these genetic abnormalities.  And really, it just means extra folic acid and maybe blood thinners in a future pregnancy.

As I processed this news, I got angry.  You mean there was a simple blood test that could have been done?  And, while maybe it wouldn’t have made a difference, maybe it would have. But, it isn’t a standard pregnancy test because someone behind the desk at an insurance agency won’t cover it unless you have had multiple miscarriages or like in my case test positive.  I realized the link between MTHFR and HELLP is nothing more than one of the many theories, but still… I am a member of a HELLP survivor board and almost everyone on that board tested positive.   Maybe a coincidence or maybe something more, guess I will add this to my list of unanswerable questions.