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HELLP Syndrome

1K views 11 replies 8 participants last post by  Astrid 
#1 ·
Has anyone ever heard of HELLP Syndrome? Last week I was diagnosed with HELLP Syndrome adn I had to have an emergency C-Section to save my life. Unfortunately my baby girl was not able to survive outside of my womb at only 24 1/2 weeks, and I was just wondering if anyone had ever heard of or had experience with HELLP Syndrome.
Gossamer
 
#3 ·
OMG Gossamer, I am so sorry. I've never had HELLP syndrome, but I've taken care of women with it (I'm an L&D nurse). As you know it is extremely, extremely serious complication of pre-eclampsia. Thank G-d your caregivers caught it, b/c the most serious cases I've seen are ones that did not get diagnosed until late in the game with horrific consequences. If you want to PM me, feel free.
 
#6 ·
Oh gossamer I'm so very sorry. I had HELLP syndrome as well, but I was lucky and I was 39+ weeks at the time adn thus my baby was fine. I also had a very severe case. Later I learned that there are women such as yourself out there who get it so much earlier with terrible consequences. I can't offer you much more help except that this kind of situation is so out of your control. I don't think you could have exercised more or differently, or that you could have eaten differently to change the outcome. It's the terrible randomness of life. Many
to you. If you want to PM me though.
 
#7 ·
Thank you all for your sympathy and advice. Liamnemma, what kind of symptoms did you have? How long did it take for the doctors to diagnose you? I was on bed rest for 2 weeks because of high blood pressure. FOr a week before I was diagnosed I had an intense pain that everyone kept telling me was gas or constipation, I later found out it was my enlarged liver causing me so much pain. I went to my OB-Gyn and she checked me into the hospital and within 3 hours I was on the operating table. My platelets were 51,000 when normal is 250,000. They said the only way to save my life was to deliver the baby. Mary Rose was born at 10:21 and died an hour later. I had to have a vertical incision because the baby was so small, so I will have to have a C-section for any pregnancy because the incision could rupture if I go into labor. I am interested in your experience if you want to share it.

Gossamer
 
#8 ·
I had that same intense pain too. I woke up with it one morning and then told DH that he had to call me every thirty minutes because I was afraid it might have something to do with blood pressure. It slowly subsided over the course of the day, coincidentally every time I burped. So I chalked it up to gas. A friend did suggest to me that I might have HELLP syndrome, but not knowing anything about it, I shrugged it off. This was on a Monday. I had a dr's appt. on Wed. a.m., and I went to it, and at that point attributed the pain to a muscle pull, as I'd rolled over funny that early a.m. and had it occur again. By Thursday evening I felt fluish, I was nauseous and had a mild fever. I took my temperature on and off all night, and luckily for me, my water broke about 6 a.m. on Friday morning. Throughout the third trimester I had dizzy spells and blinding headaches, now I realize they were likely signs of HELLP. I didn't spill any protein though, and my bp was fine at doctor's appts, and I never complained about pain to my doctor, so it would have been hard to diagnose me based on their lack of information. When my water broke, they started doing blood tests and of course that's when they realized how low my platelet count was. I believe I was at 53,000. I also had a c-section under general anesthesia, although luckily I was able to have the low transverse cut. My ds was born quite healthy, he suffered no ill effects. We were extraordinarily lucky.

I'm so sorry for you and Mary Rose. What a lovely name. I hope you got to see her at birth, and didn't have to be under general anesthesia.

Leah
 
#9 ·
Oh, gossamer, I am so, so sorry for your loss. I know of HELLP as a LLL Leader. I had a mom whose sister had this. They had to whisk her off to San Francisco after her c-section (3.5 hours away) and her premie baby (about 32 weeks) stayed here in a local hosptial. The mother's life was in grave danger. It was her wish to have her sister breastfeed her baby. The aunt called me to ask about nursing and pumping (she was nursing her own daughter who was 8 months at the time). Her sister did make a recovery, but it was touch and go there for time.

(((((hugs)))))
 
#10 ·
I thought I would try to write out my story so everyone would know what an angel I had. On May 12th or so I was diagnosed with Pregnancy Induced Hypertension (PIH), due to a very stressful situation at work. I was put on Aldomet twice a day. I went back in 2 weeks after being on the Aldomet and my blood pressures were still too high, around 140 over 100, so they upped my dosage to 3 times a day. On Friday, July 18th, I noticed that for the past 3 days my blood pressures were at least 160/110 and I had some edema, so I called the doctor's office. When they got back to me, they told me I needed to come in right away. My BP was 150/110. They had me lie on my left side in the dark for 15 minutes and my BP was still the same. My doctor wasn't there, but his officemate was and she said I was now a high-risk pregnancy and they were referring me to a different OB-Gyn and I was on bed rest for the weekend. I called the high risk OB-Gyn and they said I needed to see a Cardiologist first, so we made an appointment for the following Tuesday. We then called back the high risk OB-Gyn and they said they could see us August 6th. I hung up crying, here I had just been upgraded to high risk but I couldn't see a doctor for 2 weeks? Were they kidding? My husband called back and bullied the receptionist into giving me an appointment on Thursday after the cardiologist, but instead of seeing the doctor, we were going to see the Certified Nurse Midwife. Again, were they kidding? I had now been upgraded in my risk but downgraded in my care. On Sunday I started having a severe pain between my sternum and my diaphragm. Everyone told me it was probably constipation or gas. But it hurt to sit down, stand up, lie down, breath, cough, sneeze, eat or drink. I stayed on bed rest until Tuesday when I went to the cardiologist. They did an Echocardiogram and EKG and said my heart looked great. But my BP was now 170/115 so they put me on Pro-Cardia twice a day and Aldomet 4 times a day. They also told me to stay on bed rest until I saw the OB-Gyn and come back in a week. On Thursday we went to the OB-Gyn and saw the CNM. She said everything looked good and take some Tums for the gas and stay on bed rest until I see the cardiologist again. We went to go make an appointment with the doctor and they initially said they could work us in on August 14th. Again my husband kind of bullied the assistant and they gave us an appointment for the following Tuesday afternoon. Sunday I had 3 nosebleeds and my blood pressure was still high, 150/100. We called the cardiologists office Monday morning and Monday evening around 5:00 or so the nurse called us back and said take 2 Pro-cardia tablets twice a day and be sure to keep our appointment on Tuesday. So Tuesday morning on the 29th of July, we went back to the cardiologist. He did an EKG and examined me and said other than my blood pressure I was fine and he saw no evidence of pre-eclampsia. So continue taking 2 Pro-Cardia twice a day and 1 Aldomet 4 times a day. And just take some Tums for the gas pain. At 2:45 later that same day, we went to the OB-Gyn. She took some urine and checked my BP, came into the room and pressed on my abdomen and asked me if it hurt there. I said yes it does, very badly. She said I was dumping protein in my urine, 3+ and blood pressure was still out of control and she wanted us to check into the hospital for 24-hour observation. My husband asked for a worst-case scenario and she said "We would have to deliver the baby tonight." So my husband and I come home, pack our bags and catch a ride to the hospital. They do some blood tests and monitor the baby's heart rate. The doctor comes in and says your liver enzymes are elevated. We are waiting for one more test to come back. If it comes back abnormal, we will deliver this baby tonight. My platelet count came back and it was 200,00 below normal. So they said they were going to deliver my baby tonight at only 24 1/2 weeks gestation. She only had a 65% chance of survival and they were going to do a vertical incision on my uterus because the baby was so small. They wheeled me into the OR and at 10:21 p.m., my baby was born. After 1/2 an hour of trying to get her to breath on her own, they realized is was hopeless and they told my husband his daughter was not going to make it and they had baptized her Mary. For another 1/2 an hour our family members and friends took turns holding Mary and her Aunt Rose was holding her when her little heart finally stopped beating and her spirit flew to heaven. I was later wheeled into recovery and my husband had to tell me our daughter had died. I was able to hold her and rock her and even dress her in a gown the auxiliary provided. My husband and I gave her the middle name Rose in honor of her Aunt who was holding her when she died. I was later told I had developed a condition called HELLP syndrome and the only way to save my life was to deliver the baby. The abdominal pain I had been feeling was not gas or constipation, but my liver was enlarged and in danger of rupturing. My platelets were so low I was at risk of hemorrhaging to death or stroke. But I am sure all of you mamas know I would have gladly given my life for my daughters. The memorial service was held today and it was beautiful. IF you have stayed with me this far, God Bless you and thank you for reading Mary Rose's story, for it is her courage and strength I want everyone to remember.
Gossamer
 
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