FYI: to all mom's who had HELLP syndrome (long)

Laura Petitpas · April 2010

Hello Ladies

Yesterday I recieved a tid bit of information regarding what may have caused me to have HELLP syndrome. It was somewhat bad news cause it just makes the situation even more of a process, but good news at the same time, because now i know there is a reason for it and hoping it can be controlled. so i thought i would share this with you all.

When i was 20 weeks pregnant, i had my first ultra sound, where they had found a large mass on one of my ovaries. it was determined to be a dermoid cyst, something that could have been there my whole life for all i know. At 25w, i had an MRI to determine how large exactly, if it was still growing, where it was located and if it was going to get in the way of my little girl being delivered and what exactly the cyst was made of. so after getting all good news from the MRI, i was good to go the rest of my pregnancy, and the cyst would be taken care after baby was born.

So besides that, I had the perfect pregnancy. no morning sickness, no swelling. It was great. at 33w everything did a 360. I went to the hospital with chest pains and difficulty breathing. I thought it was just really bad gas, so just give me some gravol or something and send me home so i can sleep. but i guess with a blood pressure of 206/190, or somewhere around there according to my husband, i wasn't going anywheres. the next 2 days my husband had to fill me in on alot, cause i can only remember so much. Rachel was delivered by c-section, because she was still in the frank breach position. And i had to be put to sleep for the c-section because i wasn't allowed the epidural. In a normal situation the cyst would have been removed while they had me open, but with the low platelets, they didn't want to taken any further chances. Rachel was thankfully a fairley healthy baby. she spent 2 long weeks in NICU. And god bless you ladies who have to spend weeks and weeks in NICU. I have much respect for all of you, cause i think if i had to spend one more week there i would have gone insane.

Anyways to move on, i had my surgery yesterday to remove the cyst. and prior to the surgery, i had to have alot of blood samples taken for alot of tests my gyno had wanted. One of these test in particular was to see if there might be something in my blood that would have caused the HELLP syndrome. by no means am i a doctor or nurse, so my medical terms are slacking, and i didn't get the information explained to me in full cause my gyno only gave me a brief discription of it right before i went into the OR. but whatever that certain blood test was, came back positive. I don't know what its called, and i'll now alot more about it in the next few weeks when i go for my follow up, but i'll do my best to explain what i understand of it so far. Apparently, whatever gene i have in my body that makes my blood clot properly, is lacking. only half the gene is working, therefore causing my blood to be extremely thin all the time. this blood disorder or gene disorder, whatever it may be, elevates with estrogen. So i am no longer allowed to take any form of birth control that have doses of estrogen in them. it also means the disorder elevates when your pregnant. In which case my gyno is 99.9% sure is what caused the HELLP syndrome and garantees me the next time i get pregnant it WILL happen again. So I am now going to have to be refered to a hemotologist (Blood Specialist) and may have to be put on some meds to control it somehow, but i don't know for sure how thats going to go yet. At least now i can be prepared for the next pregnancy, and they may even be able to control it then too. The other bad part about it is that where the disorder is in my genes, it means there is a 50/50 chance that i passed it onto my little girl. but there is no only half of the gene working for her. She either has the gene and it works completely or it doesn't work at all. So she will also have to be refered to the hemotologist and will have to be tested for it as well. So at least now i know that there was a reason for the HELLP syndrome.

I guess i just wanted to pass this info on to all of you, cause this isn't exactly a normal blood test many people would get during pregnancy or at anytime for that matter. The ONLY reason why i recieved the blood test was because of my surgery. i guess i'm just putting it out there just incase anybody would like to look into it farther for themselves.

Anyways i hope this helps some of you, and if you like i can fill you in more about it after i go in for my follow up in a few weeks.

chow for now

ShanaNChris · April 2010

I think you might be talking about a blood clotting disorder, I was tested while I was in the hospital and have 2 - Factor II and MTHFR and I did pass both of them on to my DD, she was tested in the NICU (you should get your daughter tested). Good news is that they can put you on blood thinners if you choose to have another baby. I am currently on Lovenox shots this time around and have been working closely with my Hematologist. There are a lot of ladies on this board with pre-e and HELLP that have blood clotting disorders or autoimmune disorders (lupus, etc.), which some researchers believe is what may cause pre-e or HELLP.

gwenypher7 · April 2010

Thanks for the info! I went to see a hemotologist after delivery, but they just tested to make sure my platelets went back up. PP, if you don't mind my asking - how did your ob find out that you had a blood disorder that needed lovenox? Did you have a hard time getting/staying pregnant so they tested for it?

gwenypher7 · April 2010

Nevermind! I just reread and saw that you said you were tested in the hospital. I wish they had tested me while I was there! I think I'm going to talk to my ob about testing for blood disorders before I get pregnant again.

TriciaJoy · April 2010

Thanks for the info. My OB did a thrombophelia workup at 6 weeks post-partum (looking for a cause for the early HELLP) and found a minor blood clotting disorder as well (heterozygous MTHFR) and has said next time I will likely be on Lovenex as well. (normally they'd do low dose aspirin and extra folic acid, but I was already doing that so next time we'll up the ante)

For those asking about how they found it- ask your OBs to do a complete workup. My insurance would not cover the testing before I had Robbie (I had 2 previous miscarriages and we suspected a blood clotting disorder based on family history) but they had no problem covering it afterward.

sleepyocean · April 2010

I had pre-e and also have a clotting disorder, my blood supposedly clots too easily, mine is a Prothrombin gene mutation..it's genetic and I was tested when I was a teenager because my grandfather had it and passed it to my dad, and there is a 50% chance I will pass it on to my children. Unfortunately though it's there in my medical records it never occurred to anyone when I was pregnant with DS#1 that it would cause any unusual pregnancy complications other than an increased risk for clotting. When I got pregnant this time I was referred to a peri who did additional bloodwork testing to make sure I didn't have any further clotting issues that hadn't been discovered. I am on baby aspirin and increased Folic acid this pregnancy, so hopefully that helps! I def. recommend anyone who had pre-e before to get tested for these issues before or at the beginning of your next pregnancy, and even just for your knowledge because it's not a routine test and it may help you to know if you ever need surgery!

mommamorris · April 2010

i had had a few losses, so after my last one, at 21 weeks, they tested me for clotting disorders... i have antiphospholipid antibody syndrome (APS).. but it's not hereditary, so i don't think that's what you're looking at.

with blood thinners many ladies go on to have healthy pregnancies. i hope you get the answers you need and it's nothing too serious... thanks for posting this.. i know there are probably a lot of mommas out there that never get tested for things like this.

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FYI: to all mom's who had HELLP syndrome (long)

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