Book about HELLP

Rebecca - posted on 02/27/2009 ( 20 moms have responded )

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Hi everyone,



I'm gathering information about HELLP for a book I'm writing about this illness and our experiences with it. If you'd like to tell your story, take part in a research quiz or even just point me in the direction of some great medical research or studies, that would be great! Thanks for your help.



Rebecca

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Brenda - posted on 02/10/2011

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Are you still taking contributions for this? I'd love to write my story if it can give insight to others. I know it will facilitate my healing process too. Let me know any guidelines you may have.

Rebecca - posted on 12/04/2010

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Hi everyone. My apologies for dropping off the grid. Life's thrown a lot of curves and my son was just recently diagnosed with high-functioning autism. I still plan to write a book on HELLP, but am still working on it at this time. I'm now a stay-at-home mom so I hope to finish it next year!

Margot - posted on 03/26/2010

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I am from New Zealand as well.

There are similar notes to all the stories.

I was at the start of my 34th week, my first pregnancy. I felt bad enough to go home from work early. My husband was away for work so I went round to a friend's place. I decided a walk and some fresh air would help. It didn't. I went back to work the next day.

That night I started getting a strange stomach ache, upper right quadrant. I thought it was just the babies position. I'm a small person and figured the baby just didn't have enough room and had always sat under my ribs.

I still went to work. I ignored the pain that came and went, just thinking it was me being a drama queen.

That night that pain was terrible. I ran a bath in the middle of the night. It didn't help. I didn't get any sleep.

The next morning I dozed on the couch until our midwife appointment. My BP was up, but not a great amount. My midwife recognised the signs immediately. Didn't tell us what she suspected though! She rang the obstetrician, who told her it was nothing. She had an all out argument with him and told him he HAD to admit me to hospital and at least do a full blood test.

She took a blood test of her own and couriered it to the lab, just in case the hospital were slow. We were told to drive straight to hospital, don't stop to pick up bag, nothing.

I didn't realise the seriousness of the situation.

The ob was very apologetic when the results came through a couple of hours later. I had HELLP. I didn't understand how serious it was until well after I'd given birth.

I was transferred by ambulance to National Women's hospital. My contractions started on the way.

The perfered to deliver naturally because of the chance of hemorrhage. They further induced me a couple of hours later with the gel, and later again gave me the drip. I only had gas... we got there. My beautiful daughter Grace was born 6 weeks early weighing 4 lbs. She was healthy, but had a dislocated hip and hyper extended knee. It was all very shocking.

I was very weak for a few days. I couldn't stand for more than a couple of minutes on the second day. But by the time day three came I was on the mend.

My blood pressure got very high and platelets very low. The liver pain was immense.

My blood pressure was taken every hour following delivery for several days. It wasn't coming down on its own, so I was on blood pressure pills for a couple of weeks.

I had so many blood tests, my veins collapsed as well. I had track marks.

I was discharged from hospital after a week. My Grace was in neonatal intensive care (NICU) for a week and then transferred to the Special Care Baby Unit (SCBU) at our local hospital in Waitakere.

Grace is now a healthy 3 and a half year old.

I have since gone on to have another baby and feared developing HELLP. My midwife who does jointly a medical and homeopathic path advised me to protein with every meal, also to take fish oil before and during the pregnancy.

I avoided HELLP, but developed preeclampsia, which I understand is quite common after having HELLP. For 5 weeks for blood pressure was creeping up and up. I had Korean acupunture every second day, which stimulated my kidneys to work. The following 24 hours after the needles I'd pee and pee... then the next 24 hours I'd swell up again...

Isla was delivered naturally at 37 weeks, 5lbs. As lovely as the nurses were at NICU and SCBU I was delighted to not be in that unit and have my baby beside me.

If you need further info please let me know.

I was frustrated with the lack of info out there on HELLP. So much of the research is really old.

Please let me know how you get on with publishing the book, and if I can be of any assistance distributing it in New Zealand.

Good luck!

[deleted account]

Hi everyone!

Wow it is so good to finally meet some people that have gone through the same thing as me, I am from New Zealand, I had my Girl Arliah 3weeks and 2days early.



Had a pretty standard pregnancy then one night (Wed) I went to bed and started having chest pains, I couldn't lay down, sit up, stand, anything at all without feeling like i was going to pass out I truly thought after 4hours of it that i was doing to die, i went to the Emergency room at 5am and they told me i had bad heartburn! my blood pressure was only slighty high at this point, they checked my level of oxygen in my blood through a arterial vein (ouch!) then gave me some pills and sent me home.



I had a specialist appointment at 9am and they said it all seemd fine just slightly high BP and +2 protien in my urine, sent me home, i decided i should stay up through the day so i could get a good night sleep, I didn't eat either I just wasn't hungry.



Went to bed at 8pm and as soon as my head hit the pillow the pains started again but worse! I took 2xpills from DR then 2x paracetemol from 10pm till 5am i spewed every 15-20minutes, most of the time it was nothing but nearly chocking me to death! Pains stopped on their own around 6am.



Rung midwife at 11am and told her i was worried about the baby because of all my spewing, she told me to come up at some stage and she would check her on the monitor.



After i hung up i had very dull period like pains, got up to hospital and clipped up to machine, done urine test +3 protien told i would have to stay the night to do 24hour urine test, FINALLY a real doctor (obstitrician) came from Christchurch (3hour drive away Big City, I live in a small town of 14,000) and took blood then told me i need to get to Christchurch womens hospital as soon as possible for a C-section



Got to Christchurch by ambulance arrived at 11pm put on magnesium solfate, told my platelets were extreamly low (they did tell me numbers but i can't remember) my blood pressure got up to 157/124 which is very high for me im usually 120/80 or less.



Told i was going to be induced in the morning as my blood pressure was stable and it would be better for baby to come naturally, 1am came and my waters broke, 2.43am she was out! my contractions were every minute from the time my waters broke though so i got my fair share of pain, im not sure how long i pushed for, it seemed to happen so fast i can't remember.



She weighed 5.14oz and needed a few puffs of oxygen but other than that she was fine, 20mins later they ask me to swap bed i got up an blood gushed everywhere, DR stuck his hand in 4time to stop it an it didn't work so got rushed to theatre and given a spinal tap (same as an epidural but no tube put in as its a controlled time) the spinal tap was funny it felt like i was slowly wetting myself! got the bleeding stopped then it was all over.



Had to stay in 24hour watch care unit for a few days and couldn't'have a shower (that was grose, atleast i had a singlet and bra on when i gave birth because of all the IVs i couldn't get in or out of clothes!) Baby was fine, they were still very worried about me because my platelets wern't getting up fast as they would like, but they did eventually.



Once my mum arrived i felt a lot better because she is a nurse she explained EVERYTHING to me in simple terms that both me and my partner could understand



I too found that they do not tell you an awful lot about the condition, i think mostly at the start it is because they do not want to scare and stress you out but it would be nice for them to elaborate once the ordeal is over.



Sorry it's such a long story and i hope it helps in anyway, feel free to ask any questions.



P.S I also looked like a junkie at the end of 3days having so many blood test my veins collapsed they had to take from my feet!



thanks xx

Rebecca - posted on 04/09/2009

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Erin, thanks so much for sharing your story. It sounds terrifying, but I am so happy to hear your little girl is healthy and well.

Erin - posted on 04/06/2009

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Hi Rebecca, My story goes like this...

I woke up one night with this horrible chest pain. Felt like someone was stabbing me. I didint sleep the whole nite. I think i cried most of the night. My husband was so worried. Also for about a week I had such swollen hands and feet. They itched like crazy. In the mean time I had my 28 wk appointment and they found protein in my urine. they had me collect it the whole weekend and brought it in on Mon. 2days went by and I heard nothing. I called and talked to a nurse and they had me go in. My husband brought me to the Dr's and they ended up addmitting me to the hospital that night. The Drs and nurses seemed frantic....meanwhile I thought I was going home the next day. My husband got pissed off because they wouldnt tell us anything. Finaly about 11pm they told us I was not leaving the hospital pregnant and it probably wouldnt be more then a few days. It was a waiting game to try to keep her in me as long as possible without putting my health at risk. They gave me the steroid shots for her lungs. Then another I think the next day. They said it took 48 hrs for them to take effect. They immediately put me on an i.v. of magnesium. Apparently they were affraid I was goin to have a seisure. I was admitted on a wed nite around 5pm. Thurs fri and sat consisted of : monitoring the baby, ultrasounds, medication and having blood and urine collected almost hourly. By sun morning I was so tired and out of it from the magnisium. they woke me up at 7am and said we are taking her at 11am because your blood platelettes have dropped to the minimum that they can so your blood will cloght. so I called my family. They prepped me for surgury around 10am. I dont remember to much my hubby had to fill in a lot of blanks...just like you guys had yours. I was 29 weeks and 3days. she weighed 2 lbs 8oz. She was a fighter. she kept pushing the oxygen mask off in the delivery room. they took her off the resperator hrs after she was born and off the c-pap days later. they said she would spend 11 weeks in the hospital and was released after 5 wks. she has no long term affect at all. she is 10 mo old now. We are talking about having another but my dr said after having hellps once your chances of having it in your next pregnacy is 30-40 %. My husband says we still have a 60-70 % chance of a normal pregnacy. So in conclusion my symptoms were high bp, low blood platelet, liver enzymes were messed up, extreme swelling of hands and feet along with itching. chest pain. I didnt have the headaches or the right upper quadrant pain though. Good luck and Id like to see your book too,when your done!

Rebecca - posted on 03/07/2009

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I am still in the initial stages of gathering all the published research I can find, coming up with an outline, and finding women who are interested in sharing their stories. I came up with an informal unscientific quiz to see if there are any similar trends in our stories. If you'd like to take it, just shoot me a note through Facebook and I'll send it to you.

Nicola - posted on 03/07/2009

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yes i totally agree with u !



how are you going with ur book? what is the research quiz u mentioned on ur first post? xx

Rebecca - posted on 03/06/2009

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lol.. it's just like any other city with upsides and downsides.

I'm a bit on the fence, too, regarding a second child. I am just really worried it would happen again and that it wouldn't have such a happy outcome, but not for me so much as the baby. I'd be horrified if that choice had serious consequences for the child.

Nicola - posted on 03/06/2009

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its so annoying not knowing anything , me and my boyfriend have been discussing baby number 2  and deep down i would love another baby but i dont want that to happen to me again i wish i knew more!



oh u would never guess who i managed to speak to last month .. i had to go to the outpatient clinic as i have some scar tissue damage and my doctor actually studied and done research on HELLP for 12 years ,so obviously while i was there i was asking him about it but he didnt say much as i wasnt there for that reason!!  he was nice tho just very busy!



wow u live in las vegas amazing  xxxx

Rebecca - posted on 03/06/2009

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I'm from the States, Las Vegas :)



Unfortunately, I think the level of knowledge is about the same everywhere.

Nicola - posted on 03/05/2009

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just a quick question where are all you ladies from? do u think that maybe it has something to do with where we are from? maybe a certain country has more info on HELLP  than other countries maybe it occurs more in certain countries ...hoping this is making sense ??



oh im from England XXX

Rebecca - posted on 03/05/2009

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Hi Kerri,



Yes, my doctor was the same way just telling me I had it, but nothing really more than that. I'm amazed by some of the other women in different HELLP groups I've come acrossed who have known exactly what their platlet counts, etc. were. I feel like I was grossly underserved by my doctor, but suspect like you do that he just doesn't know enough about it to provide the information we all crave.

Kerri - posted on 03/04/2009

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Hi Rebecca, my story goes like this:



My first two trimesters seemed to go rather textbook, no major problems, just a lot of throwing up.  Third trimester comes around and as far as we all knew, I was progressing just fine, but still throwing up.  I started to feel rather "yukky" (that's a technical term, you know), all day, and it wouldn't go away.  It was the kind of feeling like you are starting to get the flu or a bad cold.  I couldn't really shake it, but I didn't ever get worse or the actual flu, so I thought it was just third trimester exhaustion, and let it go.  I also started feeling the upper right quadrant pain, but I figured that it was the baby kicking me in the ribs or something, just really sore.  That also persisted for a very long time.  (this part is my fault:) I didn't say anything to my doctor about that pain because like I said, I thought the baby was bruising me and I didn't want to be a whiney patient.  Now, the doctor knew that my platelets were low and he had me on prescription Iron pills from the time I took the gestational diabetes test.  At about 36 or 37 weeks, I developed a rash in my underarm area, extending down my sides, which nothing would aleviate the itch.  That hung around until the baby was about two weeks old.  Doctor decided that it was due to me taking hot baths or something like that.  I also had the occasional tingling in my extremities, sometimes a little numbness.  My blood pressure was never high or abnormal at all.  I showed to have a small amount of protein in my urine at each checkup from about 30 weeks on I think.  But the nurses and doctor didn't appear too concerned because "it was such a small amount". 



So, we made it to 40 weeks and one day and the doctor decided that we would induce that night at midnight.  I was already having a few contractions, but not very strong.  When my doctor came in at 9am, he broke my water, to try to help me progress.  I stayed at a 2 1/2, and never progressed any farther.  I asked for some pain meds or the epidural (begged actually), and they came in and did a blood test to make sure it would be okay.  By the time I was screaming for the epidural, thanks to the pain, the nurses came in telling us that the anesthesiologist wouldn't give me one, and my doctor would most likely say no also.  My doctor came in to check on me and have a conversation with us about my platelet count and my pain control options.  Apparently, my platelets were too low to administer the epidural, because I might not clot from the punctures. 



Thanks goes out to my husband, he was being persistant and making my doctor think about the situation harder.  They started going through all of the possible causes for my platelets to be so low, and my doctor *finally* thought, "well, it could be hellp, but I doubt it..."  He ordered more blood work, and came back soon with the Hellp diagnosis.  Less than thirty minutes later, I had a c-section under general anesthesia. 



My doctor never really said much else about the Hellp syndrome, or about what stage/level I had. (I'll have to ask him about that at my next appt.)  I'm guessing that he hasn't had many patients turn up with it.  Looking back at all of my symptoms, I definitely was being guarded by angels.  I acknowledge that I should have brought up all of my gripes with the nurses and doctors during the last trimester.  If I had done that, maybe we would have caught it earlier.  (Don't get me wrong, I'm so thankful that my little monkey had the chance to make it to full term.)  The symptoms all added up looking back at it.  Hard lesson learned. 



I hope this information helps your efforts.  Unfortunately, because my doc. hasn't had any more of a lengthy conversation with me about the Hellp syndrom issue, I don't have much from him to go on.  I am going to definitely sit him down and talk some more, but unless he's had more experience with it, I'm not going to have much luck.



So far, my little boy has had no problems and is 13 months old now.  I have had gall bladder problems, which led to having it removed three months ago, but really that is the only issue that I have had.   



If you have any questions, just let me know.

Nicola - posted on 03/03/2009

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hi Rebbecca ,thank you for sharing your story and im so glad everything worked out for you and kaden and ur husband - like your husband i wouldnt ofgot through it without my boyfriend we really have some amazing men in our life!



it sounds like you had such a horrible time and no wonder you want to find out more abot what happened to us ,but your right there is nothing but these chat rooms for us, they dont tell you anything in the hospital or the doctors its not in any books and very little information on the internet ,so writing a book is a fantastic idea .



i am actually waiting for a letter to arrive from the hospital so i can speak to a doctor and they will go through my notes with me and my boyfriend and explain as much as they can to us  i am so excited  (that sounds sad doesnt it), but i really want to know what happened!!!



what is the research quiz you mentioned on ur first post? if there is anything else you want to know then ask away ,it really does help me to talk about this ,i hope it helps you 2



xxx



 

Rebecca - posted on 03/01/2009

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Hi Nicola,



Thanks so much for sharing your story. I am so happy to hear your litlte one doing well. Things seemed to happen very quickly for me, too, but definitely *not as fast as your experience! I know how hard mine was and I can't even imagine it happening even faster.



My experience with HELLP began my 27 week when I went in for a normal check-up and my doctor was so alarmed by my blood pressure that he put me into the hospital for what turned into several hours of monitoring. It finally went down enough that they were comfortable with sending me home, but ordered me to spend the weekend on bed rest and to come back on Monday (it was a Friday). When I came back, my BP was still running high so my doctor told me to go on immediate maternity leave and spend it on bed rest at home. I did as instructed and, although, a little worried, I truly thought I would just spend the rest of my pregnancy on my butt at home.



I was just five days into bedrest, though, when I woke up in the middle of the night to use the bathroom. As soon as I stood up, blood started running down my legs. I immediately sat down on the floor and tried to use my clothing to block the flow while I called to my husband for help. We got into the car as fast as we could and flew to the hospital - both of us thinking that I was going to lose the baby that night. When we got there, the blood flow had tapered off and the doctors discovered that my placenta had partially detached, something that's apparently not that uncommon with preeclampsia and HELLP. They said that I would spend the rest of my pregnancy in the hospital and that the goal was to get me as close to my due date as possible.



I made it about two days before I started to get sicker and sicker. It was at that time the doctors decided to inject me with steroids in order to give the baby's lungs a developmental boost. Two days later, I was at my sickest when they decided to do an emergency c-section. My son was born at 2 pounds, 12 ounces right on the cusp of my 31st week. I was so sick, though, that I only remember getting a fleeting glimpse of him right after he 'arrived.' It took me two days to recover enough to see him again. Amazingly, the hospital didn't diagnose me with HELLP until the morning AFTER my son's birth. They said I had the most severe version. I thank God for my husband's strength and love for he truly carried me and my son through this dark time.



Kaden ended up spending eight weeks in the hospital, but amazingly he didn't have any serious health problems. He was on oxygen for a while, but other than that he just needed time to grow. I was in the hospital myself another four days after my son's delivery before they were comfortable with sending me home (on bed rest again for another week).



While I am truly grateful for our happy outcome, I am struck by how much is not known or discussed about HELLP, even within the medical community. I've realized how much of a lifeline these chat groups can be for women like us and I wanted to try to capture that in a book that would help to educate as well. While HELLP is exceedingly rare, there are just too many of us not to warrant more attention.

Nicola - posted on 02/28/2009

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Hi Rebecca ,im afraid its a long story but if it helps u then thats great!



everything happened so fast its kind of hard to remember everything but here goes....



it was the day before i was meant to start maternity leave(35wks 3 days) and id just finished work,my friend from work took me to the doctors just as i had to get some results back as i had been suffering with itchy hands and feet, when i got there the midwife told me that the results were fine but while i was there they might aswell check everything ,everything was fine until it came to my blood pressure the trainee midwife took it and looked at the actual midwife and asked her to check it again and she said ur blood pressure is very high so u need to go to the hospital (not so bluntly tho she was very nice )



when i got to the hospital they checked my bp etc and then they told my boyfriend that he will need to go home and get an overnight bag for me ,by the time he came back they said i needed to have an emergency ceseaeren .



 



to be honest i cant remember if they had told me i had HELLP at the time but i just remember them saying my platelets were very low (they had been low throughout my pregnancy)and i had to have a general as i had a risk of hemorraging,(which i did anyway )but that was the safest option.



 



i actually managed to get some sleep that night and my boyfriend was allowed in my room he didnt get much sleep bless him)



 



but in the morning i was called into theatre and then i woke up to find out i had a little boy (jake) who was 4lb 9oz - he was actually born with no heartbeat,and wasnt breathing but the doctors managed to pull him through and put him on a ventilator, and then a c pac machine (think thats whats its called )



 



he was then in the high risk baby room for a week and then he was in the grow room for another 2 weeks (i had to stay in hospital for a week after i had him)



 



jake was born on the 18th april ,he was due on the 18th may but came home from hospital on the 8th may 2008 ,jake has had no problems since leaving the hospital he has a little bit of eczema but thats probably genetic as me and his dad both get it a little bit.



 



he is now 10 months old and there is no way u could ever tell that he was premature he now weighs nearly 23lb  and could eat for england lol



i am very interested in your book that u are writing so if u need any help from me then u can ask me anything id love to help .



would u mind telling me ur story?



nicola xxx

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