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Anybody here have HELLP Syndrome?

1K views 7 replies 6 participants last post by  OnTheFence 
#1 ·
The reason I ask is that my bout with this nasty and scary little thing did not "resolve" with delivery - but rather, "came on" AFTER I delivered (which is very odd, but have run into 1 other mama who had this too) - went undiagnosed for 1 week - until I ended up in the hospital in an ambulance (couldn't breath, pulse-ox something like 80s?, pylo-nephritis, bleeding into lungs, 104 degree fever, ughh -- and I thought I had "mastitis") -- 1 week after delivery.

I'd like to connect with other mothers that experienced HELLP - and hear their experience. Its very scary (mams and babies die from it), its seemingly difficult to diagnose -- and you are suppose to be very high risk for HELLP again after experiencing it once -- yet doctors will often debate whether or not you "actually" had it?
 
#5 ·
My best friend had HELLP a couple of months ago, it came on during her labor. She was pregnant with twins, but didn't know it. Both babies were born fine (at home), but then the placenta wouldn't come. The midwives had to do a manual extraction, and my friend lost a lot of blood. Then they realized that her blood pressure was super high. She couldn't sit up because she felt too dizzy. She was so out of it and just barely present. Her reflexes became very sensitive too. She was spilling protein into her urine. Sometimes she would seem to be getting better, blood pressure would stabilize, and then shoot up again. 36 hours after the babies were born, the midwives decided to transport her to the hospital via ambulance. At the hospital, she was diagnosed with HELLP. She was put on mag sulfate, and later given a couple of blood transfusions. She quickly improved, and went home with her babies after three nights.

It's interesting that you say once you've had HELLP you're at high risk to have it again. . . the doctors at the hospital told us it was very unlikely that she would get it again. Multiple pregnancy is a risk factor for HELLP, and my friend was just telling me that she read an article that links a large placental site with HELLP. If you have identical twins (as my friend does), the can have just one placenta and it can be really big.

Anyway, she used to post on MDC, but she doesn't have internet right now or I'd hook you guys up.

It definitely is a very scary disease! I'm glad you came through it okay!

Lex
 
#6 ·
Lex,

Depending on when you developed it and how bad you had it you have up to a 27% chance of getting it again. I started developing pre-e in my 7th month but didn't get severe until close to delivery and got help at 38 weeks. So i'm at very high risk of pre-e again but I have a much lower risk of HELLP again because I developed it so late and I wasn't severe for HELLP. (felt like I was dying though and was sure of it!)
 
#7 ·
I too had HELLP. Didn't know about it until I went into labor. This was my first baby and my midwife kept telling me what I had was heartburn. I too felt like I was dying. I also had a retained placenta. After doing some research we found out it was much more serious than the doc let on. I think it came on about week 34, but I was just told it was early labor and given meds and told to rest. It is scary. We are considering another baby but are really worried about the risk. I have been told and read so many differnt things, that you don't really know what to believe on the safety of having another baby. We will just have to see.
http://www.hellpsyndrome.org/
This organization is doing research on the syndrome. I found some good info there.
 
#8 ·
Quote:

Originally Posted by TripMom
The reason I ask is that my bout with this nasty and scary little thing did not "resolve" with delivery - but rather, "came on" AFTER I delivered (which is very odd, but have run into 1 other mama who had this too) - went undiagnosed for 1 week - until I ended up in the hospital in an ambulance (couldn't breath, pulse-ox something like 80s?, pylo-nephritis, bleeding into lungs, 104 degree fever, ughh -- and I thought I had "mastitis") -- 1 week after delivery.

I'd like to connect with other mothers that experienced HELLP - and hear their experience. Its very scary (mams and babies die from it), its seemingly difficult to diagnose -- and you are suppose to be very high risk for HELLP again after experiencing it once -- yet doctors will often debate whether or not you "actually" had it?
My neighbor/friend had HELLP syndrome and delivered early for this reason -- literally to save her life. She is nearly five month post partum and still have problems with high blood pressure and pain in her side where her liver is. She is going to someone next week to get her liver enzymes tested again and to have further testing.

She had her tubes tied. Her first pregnancy was an "iffy" HELLP diagnosis and when she got pregnant this last time she wasn't all too sure she would have the same problems. She did but worse! I've never been more scared for someone in my life as when I saw her the night she delivered.

I hope you can find some answers and other women to talk too. My friend is not an online kind of person but I will point her in this direction.
 
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