What is HELLP Syndrome? I get asked this all the time.
Most people have heard of Pre-eclampsia; I haven’t met anyone – other than a medical professional or a fellow survivor – who has heard of HELLP Syndrome.
If you look online there is limited information on it. The NHS website describes it as a complication of Pre-eclampsia. From what I understand, there has been insufficient research to prove the two are related. In addition to this, the NHS website has only one small section outlining what HELLP syndrome is.
One of the best sources of information that I have found has come from the Pre-eclampsia website. This is the source I have used to outline what HELLP syndrome is for this post.
So what does HELLP stand for?
- H (hemolysis, which is the breaking down of red blood cells)
- EL (elevated liver enzymes)
- LP (low platelet count)
What is it?
HELLP syndrome is a life-threatening pregnancy complication which usually occurs during the later stages of pregnancy, or sometimes after childbirth.
This is the important part. The physical symptoms of HELLP are very similar to pre-eclampsia and sometimes it is misdiagnosed.
- Headache √
- Nausea/vomiting/indigestion with pain after eating √
- Abdominal or chest tenderness and upper right upper side pain (from liver distention) √
- Shoulder pain or pain when breathing deeply √
- Changes in vision √
- Swelling √
Signs to look for include:
- High blood pressure √
- Protein in the urine √
The symptoms I have √’d, I experienced in the month leading up to being submitted into hospital. We were told at the time that my HELLP syndrome had developed straight after the birth of my children. The fact that I displayed many of these symptoms during pregnancy demonstrates the difficulty in diagnosing this condition, even for experienced, highly-qualified medical professionals.
HELLP syndrome has a frighteningly high mortality rate; some of the reasons for which are liver rupture, stroke or kidney failure.
I want to point out that these can usually be prevented, providing they are caught in time. Which is the reason that raising awareness of this is so crucial.
If you or someone you know has any of these symptoms, please see your healthcare provider immediately and share your concerns.
HELLP syndrome itself cannot be treated. Giving birth is the first step to ensure the best possible chance for mother and child.
Hospital admission is a must and the doctors will treat the side effects until your body recovers from the condition itself. For example, I was on blood pressure tablets for a while after I gave birth until my blood pressure returned to normal. Blood transfusions may need to be carried out to increase the platelet count for the mother.
Sufferers from HELLP Syndrome are at greater risk of getting it again during subsequent pregnancies. I was told that were I to have more children, my pregnancy would be treated as high-risk with more frequent monitoring to mitigate that risk. But I was not offered counselling to deal with what happened to me.
It is worthwhile noting, as per my previous post, that I ended up organising my own counselling. On hindsight I think this should be offered to everyone that has been through this life-threatening condition.
I have no plans to put myself at risk by having more children. When I tell people that, they frequently say I will change my mind when the boys are older. I will not. I have two boys and I survived to enjoy the journey of being their mother. I have no intention of leaving them. I will admit now I would love to have more, but I will not risk my life for it.
From what I can see there are no charities set up dedicated to HELLP syndrome alone, although some awareness is raised through the Pre-eclampsia website. If anyone knows of any I would be grateful if you could leave the link in the comments.
When I started to do more research for this blog, I was struck by how many people have been affected by this. Statistics suggest that 5-8% of pregnancies in the US develop Pre-eclampsia, of which 15% develop evidence of HELLP Syndrome – that’s as many as 48,000 women each year in the US alone. There are many blogs and Facebook pages dedicated to survivors. Their stories are horrifying, some much more so than mine.
There are also, sadly, many stories where the mother and/or child did not survive. When I think of this I feel petrified. My husband has admitted to me there were a few moments, where he thought he would be a single dad and I would not survive. I can’t imagine how this must have felt.