Painfull

Stephanie - posted on 01/08/2010 ( 17 moms have responded )

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HELLP syndrome is one of the most painful things I have ever expierenced how did you guys find out you had it and what was your expierence like? How long were you hospitalized and how are your babies now? Mine died

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Johann Micola Von - posted on 08/09/2013

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I am sorry for your loss. After developing HELLP my son was born at 39 weeks with sever IUGR at 928g. He was hospitalised for 7 weeks in order to get his birthweight up to take him home as he had significant feeding issues. this son has Asperger's and my second pregnancy was monitored by a high risk specialist and has no issues there and was delivered by c section as a risk preventer in order not to develop the condition again and this son has autism. My Hellp syndrome did not show high blood pressure normally associated with pre eclampsia.

Lyneeda - posted on 05/24/2010

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i have never heard of this but would like to know how its caused&exaclty what it does an the symptoms of it so that i may be able to inform pregnant friends i didnt kno what pre-eclampsia was i read about it an its sad to say but if it has never happend to you or someone you know you just scan thru the information/not pay it any attention but im a firm believer of each one teach one!so teach me all you know!

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Amanda - posted on 07/26/2014

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Hi, i am new to this community. I just wanted to say thank you to Johann Micola Von Furstenrecht for your post. I too was diagnosed with HELLP Syndrome with my first baby at 38 weeks and he was delivered at 39 weeks. He is now 4.5 yrs old. He has recently been diagnosed with Autism Spectrum Disorder and we are only just starting on our pathway to getting Therapy etc.. Actually we are still coming to terms with what ASD is really all about and what impact it will have for our son and our family's life in general.. but I am keen to find out if having HELLP Syndrome while pregnant with him might have any link to the cause of him getting ASD. So i just googled it and stumbled upon the link to this page. When i noticed your post i thought.. 'Hey there are others out there that, like myself, have had HELLP Syndrome and now have a child / children with ASD. I think I'm going to have to speak to my Paediatrician again and do a little more investigating. I know they say that there is no known cause or cure but i just feel i need know whether there IS ANY link between HELLP and ASD.. Have you or anyone else on here been able to find out any further information regarding this topic? I would love to hear your feedback. Thanks :)

Michelle - posted on 06/08/2011

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Wow, Stephanie, I am so very sorry for your loss. I was scheduled for my 30 wk appt, and the night before that appt I had the absolute WORST pain in my abdomen that I have ever felt. It started after I ate dinner, and lasted until about 2am. I got in the bath to try to soothe it, and it worked the first time, but when it came back it was worse, and a bath didn't help. I was also eating Tums like they were candy. Finally, I decided to take some Tylenol and after about an hour it went away. I woke up the next morning and almost missed my appt. I threw on my shoes and coat and rushed to the Dr. When I was called back, the nurse did the routine weight check and urine sample. She noticed that I was VERY swollen and my protien count in my urine was high. I was having BP issues for quite a few weeks by then, and didn't really think anything of it. She asked me if I had any abdominal pain, and I told her about the episode from the night before. She then told me to lay on my left side and just relax. When my Dr. came in, he immediately said that he was concerned about my symptoms. He told me to go home, pack a bag, and meet him at the hospital; that he wanted to monitor me for a couple of days. I started bawling! My bf at the time was working out of state, so I called my mom and his mom and told them to meet me at the hospital. When I got to the hospital I admitted myself and was hooked up to a high dose of Magnesium and waited for my Dr. to arrive. When he finally arrived around 2:30pm he told me that the abdominal pain I was having the night before was my kidneys failing and that I had a rare dianosis of HELLP syndrome. They couldn't get my BP, protien or platelet count under control, so they decided to give me a steroid shot and told me that I would deliver my baby in the next week. At this point my liver was also failing. After a few hours I was told that she would be delivered in the next couple of days and if my platelets didn't come up they would have to put me under for the C-Section, which is very dangerous. I was given another steroid shot 12 hours later to help with my baby's underdeveloped lungs. My platelets finally went up enough to just have an epidural and she was delivered 28 hours after I was admitted. Katelyn was 2lbs 8oz and stayed in the NICU for 7 weeks before she was discharged. She had a few complications while admitted, but they haven't seemed to affect her now. I was admitted for another week after she was born due to my BP that was still very high. My daughter is now 3 years old with only low weight and a very slight case of asthma (only when she is sick). Other than that, she is very healthy. My organs are just fine now, and I have since carried my second baby to 36 weeks (he was only early because of my complications with my daughter) and he was delivered with no complications at a whopping 6lbs 5oz at 4 weeks early! I felt blessed enough to have gone through what I did with my daughter, but after hearing these stories of babies who did not make it I can't even begin to explain how much more blessed I feel to have two relatively healthy babies. Thank you all for sharing your stories and reminding me how blessed I truly am!

Laura - posted on 02/22/2011

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I saw the doctor the monday before thanksgiving for my biweekly visit, I was a little swollen...and my bp was a tad high, but he wasn't concerned. I started having a pain in my back that week, but I figured she was just in an odd position. The day after Thanksgiving, I was miserable. Throwing up, exhaustion, and the back pain. About half way through the day the back pain turned a stabbing pain high on my right side. As this was my first child, I was very cautious and calling my midwife for every little thing. After about 30 minutes of the stabbing pain, I called and they told me to come in. I was in triage for 2 hours while they ran tests...no one was telling me what was going on. The baby was moving fine, my blood pressure was through the roof and I was very swollen. Finally a doctor (who ended up being my surgeon) came in and straight up told me that I had HELLP. He said that if it were just my blood pressure and liver being elevated, that he could have kept me on bed rest with steriods. But my platelets were scary low. You are supposed to have around 150,000 while I had 40,000. They rushed me off to pre-op to give me the mag sulfate and a platelets transfusion. Isabella was born at 26 weeks, 1lb 5oz. She is still in the NICU, but is doing ok. @ 5lb 12oz and is on the CPAP. I had no complications from HELLP once she had been delivered.

Brenda - posted on 02/10/2011

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So sorry to hear of everyone elses losses and trauma. I have only found out 2 1/2 years after giving birth that HELLP syndrome is what I had. During the saga my hubby and I were pretty much told 'you're body's going into early labour and you have to have your baby'.
I never got to see my visit records until afterwards, or the same midwife so nobody picked up that my BP was slowly rising from about 20 weeks, and cos I'm so slim they all said the swelling I reported was ok and not too worry. At 33 weeks I went to my GP for the swelling because my mum told me to - she has pre-eclampsia twice. He sent me to hosp. They transferred me to a city hospital who watched me for the day and sent me home. No protein in my urine and their concern seemed to be the mild painless contractions I was having. They gave me drugs to stop the contractions and sent me home with an appointment the following week and a couple of tabs for my mildly elevated BP. During that time I started to get the most major 'heartburn' ever, I swelled like a baloon, saw little silver floaters in my eyes, felt a bit 'off' and things began to get blurry. I also recall there was a day where I didn't wee much. At the visit they took a blood sample for testing (I also had Gestational diabetes) and sent me home. I was still working and had worked that morning. Later in the day they told me to come back in as I was sick and once again my painless contractions were telling them I was trying to have my baby. I was ambulance transferred again to the city hospital where they took more blood and tested everything else. They induced me ainfully and I had Max vaginally and fast too. From my notes I can see that my liver enzymes were through the roof, my BP was at 150/100 (not that bad really) there was a lot of protein in my urine, and my reflexes were so bad they were considering giving me anti seizure medication. The scary thing is I really didn't feel that sick, and the doctor nearly went home for the weekend without checking my blood results!!! It scares me to think what could have happened to me that weekend. For the last couple of years I have felt really angry about the lack of information we were given, no support afterwards, the fact that my birth was taken from me, the whole premmie thing (though it was only six weeks early) and what a crappy time we had. Now I have my records and have seen a good obstetrician for explanation and discussion I feel much better. My son Max is now two and a half and was almost 3kg when born. In a way we were lucky he was so big from the diabetes because it meant he was a good size when born. He is a very happy and healthy boy and we are grateful for that - even if it was an awful experience.
Take care everyoneXXOO

Julia - posted on 12/11/2010

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I am very sorry all your losses. I was lucky that I didn't develop HELLP until the last weeks of my pregnancy. I probably should have been diagnosed @ 37 weeks but wasn't diagnosed until just before 40. I found out because my daughter was measuring small on her last ultrasound, my blood pressure was slightly elevated, I had pain in my lungs and upper abdomen, and my ankles swelled. I wasn't leaking any protein so I think the nurse practitioner didn't think anything of the slightly elevated blood pressure. The Dr. said I needed to be induced because of my daughter's strange growth measurements and sent me to have blood work done because of the pain I had experienced. Sure enough, my liver enzyme levels were elevated.
I couldn't get out of bed for 2 days after I had my DD.
It took 3-5 weeks for my blood pressure to get back to normal.
I am relieved that I didn't develop it until late in pregnancy and everything turned out okay.
Just that short time of knowing was difficult enough. And it's scary to know what could have happened. My heart truly goes out to all of you who experienced HELLP early and for so long, and for those who lost there little ones.

Amalie - posted on 04/06/2010

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carie I did the same thought I was the only silly one that would do that I was already in hospital had my steroids & had this pain in my tummy but only on one side I walked around the room thinking it will go soon its just cause Ive been laying down to long...mmm A midwife walked in to see another patient next to me saw me said are you ok I burst into tear & said no it hurts she went how long for ? about an hr she asked why didn't you press the buzzer My answer I was scared thought it would go away(while talking she's pressed the alarm & trying to get me to lay down..I did for 2mins then said I need to go to the bathroom stood up as the room now full of Dr's yelled No my waters broke & Ive never seen some much blood in all my life...I was put on the bed & wheeled straight into theater for a c-section.. shaneeka was just over 2pounds..

Emma - posted on 01/16/2010

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I'm so sorry to hear that you had to lose the most precious thing to you because of this. At 32ish I went to the doctors because I was getting really bad abdomen pain near the ribs on the right hand side, I had a rash and I was getting white flashy lights in my eyes, my doctor sent me to the delivery suite where I was basically told by the midwife there that I was wasting her time. So, I was sent back home with some normal paracetamol, which I had been trying for well over a week and given up because the pain still wasn't shifting. I had a routine blood test done because of the pain and was rang a few days late by my doctor who told me that I would be sent out an appointment to my nearest obstetrics nurse. Anyway, I'd booked a few days away in scotland and was told by my mum and appointment had arrived on the saturday for the monday so it was abit late to go and I had to reschedule and another appointment was made for the following tueday which took me to 34 & 5 days. I went to the appointment and was told there that my liver profile blood test was very abnormal, I had 4/5+ protein in my urine and was told not to move at all as she was calling for an ambulance straight away. Panic set in then but I was told there was nothing to worry about and I still didn't know exactly what this meant. I only found out after giving birth to my daughter at 35weeks after alot of close monitoring what was actually wrong with me and that's only because I saw it in my notes. By the Thursday (which is when I was induced and gave birth) my whole face, palms, feet, ankles and arms were swollen and my whole body was red and full of a really itchy rash and I was vomiting like a new born. I had severe pre-eclampsia and HELLP syndrome. I was in for 2 full weeks with my daughter, she will be 2 in April.

I will be 31 weeks pregnant with my 2nd child on wednesday, is there a chance that I will get it again? My midwife hasn't explained anything to me.

Stephanie - posted on 01/15/2010

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I have a 7 month onld son now and he is doing very weel was born early to pre-eclampsia but is healthy now he will be my only child as well

Cassandra - posted on 01/15/2010

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I was 29 weeks when I delivered my little boy. I was pretty much ordered by our EMS Director to go to the ambulance bay and have my BP checked. I was swelling extremely bad and would lose my breath easily. My BP was 165/110 so they sent me to my doctor, there it was 170/115 and they sent me to the hospital. I did the 24 hour urine test with no protein but they didn't want to send me home yet. On the 3rd night there I suddenly couldn't breathe, when that passed I threw up, when that passed I had terrible abdomen pains and was all over the bed crying something was wrong. The nurse thought I had gas or needed to have a BM. I told them no something was wrong. They said well the monitor isn't showing contractions and I said no it's not that something else is wrong. The doctor ordered blood tests that night after I was given pain meds and they diagnosed me with HELLP. The next morning I was transferred to another hospital and delivered my son after being there for 30 mins. Fortunately the first hospital gave me steriod shots as soon as I was admitted for "just in case". Now he is a happy, healthy 2 year old. I cannot ever imagine having lost him or him having lasting health problems. I believe I was truely bless with him as my little miracle. He will be our only child. I am so sorry for your loss. I remember the pain of just thinking I might lose him, I couldn't imagine bearing the grief of having lost him.

[deleted account]

I am so extreamly sorry for all of your losses.

I had HELLP as well I had high BP and high protien, it started with the chest pains and ohhhh brother i feel you on this one I have NEVER in my life experienced a pain so horrible i also threw up for 6hours straight both nights before i had my baby, I truly thought at one point into the second night that I was simply going to die after the first night at 5am (my partner was on night shift), he took me to the hospital but told it was heart burn (yeah right!) so didn't bother to go the next night.

I didn't sleep or eat for 3days finally i went to hospital made them check me all over and then they discovered i had HELLP and had to get to another hospital 3hours away (christchurch New Zealand).

Waters broke at 1am and she was out at 2.43am so the birth wasn't as bad as i expected, i'd rather go through contractions than have those chest pains anyday!



My girl Arliah is 4months old now and doing great, I would like to have another in a few years but i am very worried myself or the baby could not make it, I seriously think i was so lucky this time maybe i should not tepmt fate.

Carie - posted on 01/09/2010

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They told me that the only treatment for HELLP is for the women to have the baby. I had problems for a full week after Kaylee was born too. I was released only because I was going to be in the Ronald McDonald house that is inside the hospital. This was for critical childrens parents.

Stephanie - posted on 01/09/2010

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I got my HELLP one day after being released from the hospital from the pre-eclampsia I woke up the next morning in so much pain I couldn't breathe I took some pain pills and felt better a few hours later it came back much worse and I went to the er they let me scream in my room for 5 hours before they finally gave me soemthing for the pain they did an mri and found that it was my liver and shiped me by ambulance to a hospital in portland oregon. when I got there I passed out when I woke up they told me that they had to give me a pic line I passed out during that too thank god the bruises from that looked nasty I ended up getting a blood clot around the entire pic line and was in the hospital for another two weeks. I really have no idea what they did to make me better though does any one know the treatment for HELLP?

Carie - posted on 01/09/2010

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I am so sorry for your loss. I also had very sever HELLP Syndrome. I was only 20 the first time it happened. I had a bad pain about 3 days before I ended up in the hospital. I called my ob and she said it was heart burn and to relax about it. I had never had it before so I did not know. Three days later I woke up ver sick. I went outside for some air and I passed out at the end of my driveway. My husband (Boyfriend at the time) picked me up and rushed me to the hospital. I woke up on the way. When I got to the hospital they started an IV and watched me. It was about 4 hours before they transfered me to Strong a level 3 NICU. I passed out on the way. The emt had to start cpr on me and try to keep me and the baby alive. When we got there I woke up again. This time crying and with this pain that I could only explain as a truck parked on my chest and belly. They checked my BP and it was 217/133. They checked my liver Enzymes and they were through the roof. They delivered me at 29 weeks. Kenneth lived for 7 days before he passed.

The second time was not as bad. It happened and I was 27 years old this time. I was 26 weeks and had an ultra sound and they noticed that there was not enough fluid for the baby. I stayed in the hospital and got 2 steriod shots. On the third day they were telling me that I had HELLP again and that they were going to watch me and the baby but that I would deliver in the next few hours. I knew how important it was to make it two full days after my shots so I never told them that I was in pain. I know dumb of me. I delivered about 8 hours later only to tell them on the way how much pain I was in. Kaylee is now 2. We were lucky that she made it. She came and was only 1lb 6oz and 12 in long. We were in the hospital for 5 months waiting for her to come home.

Mindy - posted on 01/09/2010

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Stephanie,



I am truly sorry for your loss. My story never quite fit the typical mold. I began having problems with passing out, a horrible rash on my arms, stomach, palms of my hands, as well as the bottom of my feet as early as 3 months into my pregnancy. I later was told I had Pre-Eclampsia. I was never hospitalized due to lack of insurance but I had to have blood work and urine samples done twice a day for the last few weeks of my pregnancy at the hospital lab. At the very end I was suffering from liver failure, blood pressure issues, and hallucinations. I was made to go full term and my son was born exactly on his due date. After hsi birth was when I was told it was actually HELLP Syndrome. It was a very hard pregnancy and child birth. I had a dry birth. My son is now 17 years old and is diagnosed with Autism, ADHD, very mild CP, Hypothyroidism, Anxiety, Depression, Cyclic Vomiting, etc. I was also pregnant with twins in 1997 but was advised by three doctors not to take the pregnancy to full term since I was following the same path with my symptoms only about three months into my pregnancy. I was very sick. I actually lost 20 lbs while pregnant with the twins, although I ate very well and tried my best to keep it down and rest. You and your baby are in my thoughts and prayers. May God carry you through the difficult times. It has been twelve years since my loss and not a day goes by that I dont cry for my twins. Again, I am sorry for your loss.

Alicia - posted on 01/08/2010

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I am so sorry for your loss. My son died too due to the syndrome. I was class I and it was pretty sudden. No warning signs. I didn't know until after I was conscious about three days after the emergency c-section.

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