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Hellp syndrome specialists in the UK?

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Hellp syndrome specialists in the UK?

Postby Vickyjayne » Mon Jan 16, 2012 06:01 pm

by Vickyjayne (9 Posts), Mon Jan 16, 2012 06:01 pm

I'm wondering of there are any hellp specialists in the United Kingdom. I'm from the Manchester area and am looking to talk to a specialist about my experience of hellp syndrome.

Here is my story....
It was my first pregnancy and I had become so swollen, I was exhausted and had the wilds worst heart burn during the night. I was irritable, agitated every night unable to sleep because I had such bad pains on either side of my bump and just below my breasts. I had sever headaches and blurred vision And was so swollen i was unrecognisable. I saw a specialist at 37 weeks and 3 days (baby had always been small and so I was having scans every 2 weeks towards the end) this stemmed from having a low Papp a reading. Down syndrome was ruled out after having an amniocentesis.
At my appointment I cried to the specialist and told him about the above symptoms. He said 'normal pregnancy pains' and didn't even examine me. They said on the scan the baby was well over 6 lb in weight. My blood pressure was slightly raised but no traces of protein were shown in my urine so I was told to come back to the hospital in 2 days. I went back on the Friday and my bp was high again, I had plus 2 of protein in my urine and was told "you will be having your baby today"

Me and my Husbsnd were sent to the **** hospital were again my bloods were checked and urine and bp. I had no protein present in the urine, bp was fine (2 hour after initial tests at other hospital) but it showed I had traces of something in my blood which signalled I was getting pre eclampsia. A specialist came and told me 'it's coming but go home' I felt so poorly and knew something was wrong. I felt let down and very emotional as I knew what I was feeling couldn't be normal as I felt like I was dying. I'd been told to go back to the hospital in 2 days as they wanted to monitor me.

The morning after I cried to my husband because I felt ao poorly, I was frightened I wouldn't make the next 3 weeks of the pregnancy. That evening I had the most horrendous pain at the top of my bump, I tried a bath but it wouldn't go, it felt like my lungs had collapsed and I knew I was seriously poorly. We rushed to hospital and upon arrival my dialostolic bp measurement was 114. I alsp began to vomit. I had plus 4 protein in my urine and I knew something was dreadfully wrong.
I was given magnesium sulphate immediately and told my bloods were showing I was very poorly (never was I or my family told I had hellp syndrome)

I was given am emergency c section shortly after where I was told because my platelets were not clotting that I could bleed to death. My baby boy weighed 5 lb 9 at 37 weeks and 6. (I ask myself of the specialist that week had known the real weight of my baby would that have signalled that all was not ok)

I was told I had suffered major problems with my liver ( liver function reading was 255 ) and kidney damage and I was kept in hospital for 7 days because my blood pressure wouldnt budge from the diastolic readings in the 100's.

The midwives would relay that I had been seriously poorly and I was lucky to be alive. I never realised what they meant until I began researching. I realise i could have lost myplant boy and even my own life and this has taken a while to get my head around. I was on 800 mg a day of Labetalol.
Once home I could barely look after my baby, it was heart breaking as I was ao weak I could barely hold him.

14 weeks on, I'm finally off the blood pressure medication, my liver, kidneys and blood clotting are normal again but my biggest fear is will hellp strike again? Is there someone I can talk to about what happened to me and why? Will I be monitored in my next pregnancy or will I be ignored again and told I'm having normal pregnancy pains and edema.

Please someone advise me as I have been told by my gp to complain about how poorly I was treated. Had I been seen to earlier I do not believe the pre eclampsia would have developed into hellp.
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Re: Hellp syndrome specialists in the UK?

Postby Lee2011 » Sun Jan 22, 2012 12:45 am

by Lee2011 (30 Posts), Sun Jan 22, 2012 12:45 am


I can't help you with your specific question, but I can send lots and lots of hugs from Greater London. I do know that you can request your hospital notes and can request someone go through them with you, although in your case it might be worth asking if that can be done by someone different. I know I was told if I wanted another child that I would most likely be monitored throughout and on what my consultant termed "baby aspirin" in the first trimester, at least. I am not sure if he meant to go on it while trying or to start once conceived. I will definitely be talking to my GP if the situation arises and to the same team that I was seen by.

My story is, viewtopic.php?f=85&t=42655, my liver function peaked at 389, platelets bottomed at 37 but my BP never rose that high until the haematoma problems, but I was lucky to recieve the care I did. Drop me a PM if I can do anything, and if you want answers keep asking for them!

Mother to baby boy Lee born 12/3/2011 after emergency induction at 38weeks following diagnosis of severe atypical HELLP syndrome. Having come within hours of losing both our lives every smile is a celebration.
Baby sister Paige c-sectioned at 38 weeks with no signs of HELLP :)
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Re: Hellp syndrome specialists in the UK?

Postby jasmine78888 » Fri Jun 07, 2013 01:39 am

by jasmine78888 (1 Posts), Fri Jun 07, 2013 01:39 am

it is really nice post i like this info i appreciate this post keep it up......... :D
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