Tag Archives: pregnancy complications

News Roller Coaster

12 Monday Nov 2012

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I have never been a big fan of roller coasters, and last week featured way too many ups and downs.  Tuesday we found out we were having a pair of boys.  I foresee baseball and boy scouts in our future. The ultrasounds looked great for both boys; strong heart rates, 20 fingers and toes accounted for, no soft markers for any issues!

The following day I saw my regular OBGYN.  By her line of questions as she entered the room, I could tell something was amiss.  Turns out, her in office quick screen I tested positive for proteinuria.  Basically that means my kidneys are spilling proteins for some reason. While this is one indicator of preeclampsia, alone it would not lead to a diagnosis for preeclampsia.  She was very surprised the specialist hadn’t caught it the day before.  She decided to have me do a 24 hour screen, which is a much more accurate test to be sure there was not an anomaly.   She also decided for the time being it would be best for me to work from home.  She stopped short of putting me on bed rest and stressed I was not yet confined to the house or the bed for that matter, I just need to take it easy.

Thursday, things were looking back up again.  All of my routine blood work came back and everything looked great.  My platelet count was holding steady.  This was great news!

But then came Friday’s news!  I got a call from Dr. Reed.  When I was pregnant with Ansley, I saw him once.  I had not seen him since, but I knew when I was in the hospital he was the one requesting tests for research purposes and had been following my case.  I was yet to actually see him in this pregnancy, so you can imagine my concern as I am listening to his voicemail and he is asking me to call him.  Before I called him back, I called Chris and gave him a heads up.

Dr. Reed had been calling to discuss my sequential screen results.  The sequential screen is a test that is done in multiple parts to screen for Down Syndrome, Trisomy 18 and neural tube defects.  He started by discussing the Down syndrome results, I tested just outside the norm… again.  I tested the exact same with Ansley and it was a false positive.  He stressed they didn’t see any markers on the ultrasound, twins often throw the numbers off and as stands it was .2% chance based on my numbers.  All in all, I was not too concerned about this result, but it is something I will keep in mind.  There is another blood test I can do called MaterniT21, but it is only 95% accurate with twins.  The bigger concern for him was my high Alpha Fetoprotein levels, aka AFP levels.

Typically, high levels of AFP would be indicative of a neural tube disorder like Spina Bifida.  However, in reviewing my ultrasound he could see about 90% of what he needed to see to rule that out.  He said they will check again in my next ultrasound, but he wasn’t concerned about a neural tube disorder.  His largest concern was based on newer research that has shown a strong link between a poorly functioning/ weak placenta and high AFP levels.  A weak placenta can cause pregnancy complications like preeclampsia, small gestational age, preterm labor, early preterm labor (28 weeks or earlier) and HELLP.  Mixed with my history, the fact I am having twins, and now high AFP levels, he felt strongly that, at a minimum, I will develop preeclampsia during this pregnancy.

This was not exactly new news; my OB has done a good job of making sure we understand all that this pregnancy will likely encounter.  She told me the day we found out about the twins that this would not be a normal pregnancy.  She told me to expect bed rest, hospital bed rest, and that I would possibly deliver preterm via an emergency c-section.   I have done the best I can of preparing myself for whatever happens while trying to remain optimistic.  To me, this is just one more road bump to get past.  That being said, this road is getting awfully bumpy!

Questions

13 Friday Jul 2012

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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.