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My story and question

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

My story and question

Postby redheadsrule » Tue Aug 24, 2010 02:09 pm

by redheadsrule (5 Posts), Tue Aug 24, 2010 02:09 pm

Hi everyone,

This is my first post. On August 5 I lost our baby due to Hellp syndrome at 32 weeks. I had been experiencing pre-eclampsia but not all the symptoms- only slightly elevated BP and protein in my urine. I didn't experience the headaches or other symptoms but had started to have back pain that was mostly in my left shoulder. My midwives didn't think this was liver related because it was left side not right side. They were monitoring me and started me on the high protein diet. On August 2 I woke up late that night and vomited twice. Called my midwife and consulted she thought I had perhaps picked up the stomach flu. I didn't go to the ER because I didn't feel that sick at all and my midwife didn't think it was anything to be super concerned about. I had an appointment with my midwife in two days where we were going to do the 24 hour urine test and discuss other consultations for the PE with specialists. When I went to the appointment 2 days later they couldn't find a heartbeat and told me my baby had died. I had felt her moving the night before... When I went to the hospital I realized how sick I was when they ran my blood and saw my platelet level coupled with the BP which was suddenly very high. However I wasn't feeling terribly sick, just tired and well cranky which I attributed to normal last trimester stuff.

I had my placenta tested after delivery and they tested to baby for genetic tests and she was given an autopsy. I am wondering if anyone knows how long these tests take to get back from lab and any other people's experiences with losing a baby due to hellp. My husband has been calling the hospital and has not gotten any clear answers as to when we can expect the test results. I know they may not tell me anything but I want to know the results. From what I have been reading there seems to not be a great deal of data also on what my risk level is for this happening in future pregnancies? Any help would be appreciated.
redheadsrule
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Re : My story and question

Postby evancaleb10 » Wed Oct 06, 2010 04:43 am

by evancaleb10 (18 Posts), Wed Oct 06, 2010 04:43 am

Hey there, I'm so sorry about your loss and feel your pain and the emptiness you and your husband are feeling. I too loss my angel at 33 weeks on 8-23-10 due to HELLP (Class III). I had a total normal first pregnancy. This 2nd time around, I had a total uneventful pregnancy up until that day. I always had normal blood pressures and no protein in my urine at all my OB appts. I had some leg swelling that came on about 2 weeks prior but my job requires long hours on my feet at times so I didn't think anything of it. The swelling improved with leg elevation. I had intermittent headaches which were not severe and was use to headaches prior to pregnancy. I wasn't feeling bad and didn't even work that weekend so was not stressed.

Out of the blue one night i started feeling upper epigastric abdominal pain, chest pressure, pain and numbness down my right arm, and started with continual vomiting all simultaneously. From the time I noticed the first symptom to the time i told my husband to bring me to the ER was no more than 15 minutes. When i got to the ER my BP was 258/150 and they tried to get my BP down but had a hard time. There was no OB department at this hospital (which i was unaware of but this was the nearest hospital from where i lived). I was started on magnesium to help prevent seizures and once my BP fell below 200 they transferred me to a hospital for emergency c-section (this took a total of 3 hours). By the time I was transported to the other hospital the OB was unable to find my baby's heart beat. My baby was alive on arrival to the first hospital and a hand doppler measured his heart beat at 140 at that time. At this time my BP went back up and was higher now at 262/158 and labs showed that my platelets were rapidly decreasing as low as 32,000 (normal is greater than 150,000), my liver function tests were above 2000 (normal is 20-40), my kidney was failing and i had severe anemia (low blood count). The only treatment for this syndrome is delivery. I was immediately taken for emergent c-section under general anesthesia and had to receive a total of 8 units of blood, in addition to units of platelets and FFP and was in the ICU for a week.

I was hospitalized for 11 days and had to be discharged home on 4 BP meds. The only meds i've ever been on prior to this my entire life was prenatal vitamins when pregnant. Now I am obsessed about my BP and check it at least 3 times a day. I'm praying that the meds can be weaned off soon. It's been 6 weeks and I'm still on the 4 meds but 2 of them have had the doses cut in half; i guess thats a start. I experience daily bad headaches which i think are side effects of the BP meds.

I tell my story in such detail to let people know that this condition has atypical presentations and can present differently with everyone. Also PE/HELLP can be life threatening to mother and baby. As devastated as I'm for losing my baby, i do understand how blessed i am to be alive. HELLP is extremely dangerous because it more so than preeclampsia presents abruptly, like in my case, and without preceding signs and symptoms. In retrospect, the leg edema, mild headaches, and big weight gain may have been the subtle signs and sypmtoms that something bad was lurking around the corner. Problem is that all these things can occur during a normal pregnancy. I also wanted to bring attention that though these conditions usually occur during first pregnancies that they can proceed normal pregnancies as well, as in my case, and we should never let our guards down (if you're on this site then you've obviously had PE/HELLP but its good info to know if educating others).

I'm very happy to have found a place where i know others truly understand what i'm going through. I understand all our endings are not the same and some of our angels will have a chance to leave their footprints in this world while some of our angels would have only left their footprints in our hearts but we are connected by how our lives have been touched or changed by PE or HELLP. We owe it to our angels to continue to bring awareness to PE/HELLP and to continue to encourage and help each other. Thanks for allowing me to share.

Sorry REDHEADSRULE, I wanted to just answer your question but i got carried away before even getting to your answer. I also just noticed the date on your post which mean you probably already have your answer but i'll post my answer anyway. Once i realized that this should probably go under my topic with me as the author, I was too far gone. I will also copy this to my topic. But going back to your question, I did not opt to have an autopsy done, the idea was too hard for me. My placenta was sent for testing during the time of delivery and the results were back by the time i left the hospital 11 days later. The placenta was normal and no abnormalities to explain the baby's death. My OB and others in her group believed that in my case the acute insult of the entire thing caused hypoperfusion (or decrease blood flow) to the placenta leading to the baby's death. The way one of the OB's explained it was that when theres a sudden insult to our bodies the body goes into survival mode and does anything and everything to keep us alive and does not know anything about the baby. So as the blood vessels constrict (or close off or clamp down) blood is shunted to your vital organs in an effort to keep you alive thus decreasing blood flow to the placenta and baby. This made sense to me. But after all the research I've done, there is no known cause for HELLP and they don't know why certain people develop it and others don't. I've read that the recurrence rate for HELLP is 25% which is high according to my OB. I'm an optimist and i like to see it as the likelihood of a normal pregnancy is 75% :) Hope this helps and hope you and your husband are doing better, a day at a time. Take care and God bless.
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