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  1. #1
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    Exclamation HELLP Syndrome - Information for all!

    I want to put this information on the bubhub forum for all expectant mums to access

    I had never heard of HELLP syndrome before I was diagnosed with it and struggled to find information or fellow survivors afterwards.

    Here is a breakdown of the name:

    Haemolysis, Elevated Liver enzymes and Lowered Platelet count.

    The term HELLP was so named by Louis Weinstein in 1982. It is a commonly held beleif that it is a side affect of Pre - Eclapmsia but it can occur alone as well.


    HELLP is rare unlike pre-ecplamsia and occurs in only a few pregancys but I hope that with greater awareness less mothers and babies will die as a result of it.

    If you have any questions or concerns regarding HELLP syndrome please reply in this thread.
    Last edited by naiwen; 13-09-2010 at 19:25.

  2. #2
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    Hi Naiwen

    Thanks so much for sharing that. Another case of mothers intuition too and sensing something was wrong.

    I actually had pre-eclamsia and diagnosed this days before by obstetrition did and as a result my baby boy was delivered at 28.5 weeks and weighed 1266g which was a big weight for that gestation. So scary what can happen in a pregnancy so please trust your instincts - and always have your checkups...

    Take care
    Anna

  3. #3
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    Thanks Anna,


    Glad to hear your baby boy was such a good weight.
    Last edited by naiwen; 13-09-2010 at 19:26.

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    Hi Naiwen

    Excellent post. And most importantly I'm so glad you received medical intervention in time and that you and your son both survived; not only HELLP, but also the NICU rollercoaster and the tough start in life your son had.

    Even though I too had excellent medical care and was in theatre within hours of HELLP being diagnosed, we unfortunately lost our son weeks later due to premmie-related infections and their complications. He had never left intensive care.
    If anyone is interested (and this is allowed), this is our story and his memorial website:
    http://www.jayden-luke.memory-of.com
    Last edited by meagss; 02-09-2008 at 17:06.

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    Hi my sister had HELLP, her baby is now 1yo and she is still recovering. He was born at full term and HELLP was not diagnosed until 3 days post birth. Both my sister and her baby were very very ill. Many symptoms were masked by Hyperemesis. Do you have any good web links? Particuarly for those women who have had HELLP and want to explore the possiblity of having more chidlren?

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    Hi Melissa

    I don't have any actual HELLP links as I never kept any after all my research, but I know there are sites out there.

    Also Australian Action on Pre Eclampsia (AAPEC) sells a book called 'The Silent Cries of a HELLP Syndrome Baby' (it's American) for $15.00. I have read this book and found it to be of immense comfort.

    To purchase the book you can visit this link:
    http://aapec.org.au/books.php

    Just as a side note, I'd like to mention that less than a year after I was diagnosed with HELLP, I fell pregnant with our second child and went on to have a perfectly healthy pregnancy and a healthy, happy full term baby.

  7. #7
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    Pegasus is offline and all that the Lorax left here in this mess was a small pile of rocks with the one word...UNLESS
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    Thank you for your stories ladies.

    My sister had HELLP with her first baby. She went in for her normal 35check up on a Monday after starting to feel ill on the Sunday. Emergency c/section Monday night.

    Bub was delivered and both mum and baby had blood transfusions, bub was rushed to neonatal unit. We came close to losing both of them.

    My sister didn't see her bub till she was 3 days old (she was taken in an ambulance to the paed hosital).


    She was also dead scared of having another baby and had 5miscarriages between her daughter and her son who was born 5years later. No complications for her second full term pregnancy.

    Both Daughter and mum are very healthy now and had absolutely no warning signs until nausea the day before the delivery!

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    meagss thankyou for sharing your story, Jayden looks like such a precious premmie in that photo and he must have brought you so much joy while he was here on earth.

    Imelissa.r I second the aapec website they are the best I have found. There is too little awareness of HELLP out there I think.

    Pegasus, that must have been a scary time for you all, it's great to hear your sister has gone on to have a full termer.

    Thankyou all so much for replying!
    Last edited by naiwen; 13-09-2010 at 19:26.

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    Default Fellow Hellp survivor

    Thanks so much for starting this thread. I to am a hellp survivor. I had hyperamesis during my pregnancy and was very ill for the 40 weeks. I spent most of the time in bed and was cared for by family. Therefore, my symptoms of Hellp syndrome were rather difficult to pick. It wasn't until 3 days after my baby was born when my family demanded blood work (as the hospital had refused and claimed I was fine) that it was discovered. Of course hyperamesis disappears after delivery and I was still that ill that I couldnt' get my head of the pillow. I was told I would be fine after 9 days but was not told that I would have a very long recovery period ahead of me. I feel very blessed as my little one has perfect health and my heart goes out to those women who's angels did not make it. I have felt rather isolated as it is very difficult to find other women who had survived such a disorder. Does anyone know of any support groups, were familys get together??

  10. #10
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    Naiwen
    Thank you so much for your thread. I too am a survivor of HELLP syndrome. I have a 16 year old son, a 20 month old son, and our newest arrival - an 18wk old little boy

    HELLP syndrome was diagnosed with my last pregnancy.

    I had been feeling terrible for many weeks and attended my local GP on an unrelated matter (to have a mole on my boob checked!!!) and thank goodness I did.

    I almost didnt go thru with getting checked as my normal GP was on a day off, but felt so sick i didnt have the energy to battle it out with my DH for not getting checked.

    Whilst in there the GP checked my BP and told us it was 138/88 and to keep an eye on it. The next day i felt so much worse, the pain that I had under my ribs was worse, and i had a shooting pain up my spine and into my head and the worst headache i had ever felt. I insisted on going to the movies with my DH (our first date since before our little toddler arrived), i dont even remember what movie we saw!!!

    When we came home i asked him to check my BP (he has a monitor at home as he also has high BP). It was 177/127

    My DH rushed me to hospital were they started me on steriods for my babys lungs. My Obst was on an extended weekend off (always the case!!!) and his relieving Obst advised they would not deliver until my Obst returned on monday morning. (I was admitted on the Friday)

    I had level 4plus protein in my urine and full bloods were ordered.

    comparison bloods taken the next morning revealed how fast my body was deteriorating, and confirmed my liver and kidneys had failed and my blood platelets were dangerously low - so low they took blood on the way to theatre to make sure they could do an epidural and it only just came back borderline, my baby was delivered immediately at 36wks (19/04/08)

    He spent 4 days in Neonatal, and we were in hospital almost 2 weeks.

    During the delivery my bladder was shredded and i was in theatre for almost 4 hours (and wore a catheter for almost 4 weeks ) - fortunately the relieving Obst was a bladder specialist who would have been called in anyway. (for future reference - i would recommend that if you have your bladder shredded during delivery - which is caused by a previous caesarian causing scar tissue to adhere the bladder to the uterus - if the Obst tells you you should be knocked out - he is right!!! I refused to be knocked out as i wanted to BF my baby - at that stage i had no idea he would be suffer respiratory disorder - which is a symptom of HELLP for the baby - and even though i was at the largest private hospital our Paed and Obst wasnt aware the baby would be at additional risk of this - so I couldnt feed my baby for 24 hours - and the bladder repair was very very painful - i have no idea why the epidural did not provide pain relief for this, and as i am allergic to most other pain reliefs they were limited as to how they could help me.

    Our beautiful boy is perfect and a real blessing. Both of my Obst's - I ended up being looked after by the delivering Obst and my own private Obst - have told me they will retire if I try to have another baby, and in seriousness, at the rate my body was shutting down, unless i was already in hospital, they doubt they could save me and or our baby, so my DH has had the 'big op' to prevent any more babies

    It is so sad, i constantly feel upset that the choice was taken away from me, but incredibly grateful that we have our darling boys

    My body is still recovering and only just this week I have been slowly weaned off the BP medication.


    For all you other Mums who are survivors of HELLP, i send you all a big hug....


 

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