On Sunday, we went to soft play. I think I hate soft play, or maybe I love it…I can’t decide.…View Post
I realised this week – as the #happydiaries linkup came around – that I wasn’t sure I had a positive post to include. How sad is that! So… I have decided to do something about that and cheer this blog up with some fun snaps from this week.
I entered into the world of Instagram this week. I have had a personal account for a while, but never really used it. I thought it might be a good idea to back up this blog with its very own, dedicated, Instagram page. It has been a revelation to me. It is so much fun and I am not sure why I didn’t get into it earlier. I decided to use that as my inspiration for this post.
Our house has been ridden with the plague this week; full of coughing, sneezing and very little sleeping. But (I think??!?) we may be on the road to recovery now… Hopefully, I haven’t jinxed it!
This post demonstrates the week was not all bad and it is fun when you hang out with three-year-olds. Well mostly; apart from when you are suffering from sleep deprivation and spending seemingly endless amounts of time cleaning the potty.
Wishing everyone a happy and snot-free week 🙂 Find us on Instagram if you fancy seeing more photos showing what we have been up to!
Next Friday, Bob L and Bob D are going for their MMR boosters. EEK! Wish us luck! x
I had no idea I had HELLP syndrome in the days leading up to giving birth.
I had many appointments in the weeks before my due date, seeing my Midwife every two weeks. Towards the end of my pregnancy I started to experience some concerning symptoms. My midwife told me everything was fine.
The last few months of my pregnancy was tough and I expected that to be the case. I had never carried a child (far less two) to full term before so assumed the symptoms I had was normal, and my Midwife reassured me.
The month before I gave birth to the boys, I had various ailments.
I felt really tired. My heart was racing everytime I moved out of my bed. I was so exhausted that I had to have a sleep after making a cup of tea or having a shower. When I mentioned this to my Midwife, she reassured me that this was normal in the final trimester of a pregnancy.
The huge rash on my tummy was itchy, raised and sore. Progressively, it spread over the next few weeks, to the point it was all over my bump. The Midwife said to use cream; it was only stretch marks.
Black spots darted about in front of my eyes. I found them frightening and they made me feel panicky. The Midwife said that this was just a sign of tiredness.
My blood pressure was high and my heart raced when I tried to do anything.
My Midwife told me to take readings each day on a home monitor. When I took my high readings to later appointments the Midwife said that my heart was just coping with carrying the extra weight of twins around.
I had a pain on the upper left side that never went away. The Midwife said this was a foot sitting under my rib-cage.
I had a sharp pain when I breathed in deeply. The Midwife said the babies were running out of room and my organs were shifting to accommodate them.
My morning sickness had returned. Not to the extreme of the first trimester but I was nauseous, a lot. The Midwife said this was normal towards the end of pregnancy.
Headaches. A constant dull thud. Awful, painful headaches. The Midwife said that I needed to eat more. That was difficult because I felt nauseous and my stomach had shrunk to the size of a pea. And I was tired. So tired.
I was swollen. Everywhere. When I look back at photos, I struggle to recognise myself in the final few weeks. At the time, the Midwife said that was normal because it was so hot that summer.
I had protein in my urine. The Midwife said it was on the high side of normal so not to worry.
In any normal pregnancy, the Midwife would have been right with the prognosis of these individual ailments. But, as it turns out, mine wasn’t a normal pregnancy. And my Midwife missed the underlying cause. Rather than look at my symptoms in their entirety, she was assessing them individually.
Over the many appointments I had with my midwife, I had started to notice that she put ‘everything is fine’ on my notes every time.
I felt nowhere near fine. Having no experience of full-term pregnancy, I believed her; the Midwife was the expert after all. I didn’t have a ‘funny feeling’ that something wasn’t right, well not at this stage anyway. To be honest, I didn’t know any different. I was just generally anxious throughout the pregnancy.
The Midwife wasn’t the only one who missed it. High-risk twin pregnancies are often consultant-led. They didn’t seem concerned either. Although it seemed to me that they mostly read the notes from the Midwife and assumed everything was okay.
Then everything changed.
I went to a routine check-up at 36.3 weeks; my Midwife was not there. Her colleague was taking her appointments that day. I think this colleague saved my life and the lives of my children.
He asked how I was feeling. So I slowly explained all my ailments, somewhat fed-up having to go through the whole rigmarole again, seemingly just like at every other appointment. But this time, he looked concerned. He asked to look at the rash on my tummy. He looked even more concerned. Despite his consternation, I still felt dismissive. None of this had meant anything before.
He said: “How long have you had these symptoms?”. I said: “Oh, weeks, my Midwife told me they were normal”.
He explained that collectively these symptoms together were concerning, particularly the rash on my stomach which indicated problems with my liver (I later found out that he was right, it was a sign my liver was failing).
He calmly explained I needed to go to the hospital. I asked if I could go when my husband finished work. He said: “No, go straight away, I don’t want you to wait”.
So off I went to the hospital. I walked into the hospital and threw up in reception.
I had never heard of HELLP Syndrome before… unfortunately I would not hear the words for another four days. The hospital staff didn’t tell us what was wrong. But that is another story…
This weekend we had family visiting and today we decided to take advantage of a dry spell and go for a walk.
We had the usual chaos when we left the house; boys didn’t want to put jackets on, I had to run back in the house to check the coffee machine was off, boys didn’t want to get in the car, boys didn’t want to get out the car…..
We told the boys they could take one thing with them for the walk. Bob L decided to take his bike. He always picks his bike. This consistency has paid off, he is fast and it is a good workout for me to run alongside him.
Bob D decided to go off-piste (sorry I couldn’t resist the pun) and take his ski poles with him. To his credit he did carry them the whole time. He told passers-by he was skiing. Which probably was quite confusing as there was no snow and we were no-where near the ski slopes.
We started off by playing around in a fabulous park, which is really designed for adults doing gym work-outs. The boys loved it all the same.
As we kept walking we discovered a brilliant open-air museum, complete with windmill, rabbits and a cafe. It was a small 19th century village and it felt like we had stepped back in time. The boys were more interested in biking / skiing around the houses. They were impressed with the rabbits though.
We had a lovely afternoon. The boys didn’t want to get in the car to go home. Then they didn’t want to get out the car when we arrived back at the house….they wanted to stay there ‘all by self’.
Eventually the promise of snacks and an afternoon movie lured them inside. They are now happily sat with onesies on. Batman and superman of course, in-keeping with the superhero theme from yesterday. If you don’t know what I mean, check out my earlier Instagram post.
******* I ventured into the world of Instagram this weekend. Follow me here *******
What is HELLP Syndrome?
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.
There are limited information on HELLP Syndrome online. The NHS website describes it as a complication of Pre-eclampsia. However, experts are unsure if this is the case.
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 marked √’d I experienced in the month leading up to being admitted to hospital.
Doctors confirmed that my HELLP syndrome developed straight after the birth of my children. However, I displayed many of these symptoms during pregnancy. This 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 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. That wont happen. I have two boys and I survived to enjoy the journey of being their mother. I have no intention of leaving them. Although, I would love to have more, I will not risk my life for it.
There are no charities set up dedicated to HELLP syndrome alone. If anyone knows of any I would be grateful if you could leave the link in the comments. The Preeclampsia Foundation do a great job as part of their wider campaigning.
When I started researching 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.