Pre-eclampsia and HELLP syndrome are life-threatening conditions that can happen in pregnancy. Thankfully they are rare, but they can and do kill women and babies. These illnesses nearly killed me, and they took the life of my much-loved baby son.
I say this not to scare people, pregnant women especially. Pregnant women have enough to stress about. The trouble is, there is not enough awareness about these conditions, or their symptoms.
The issue is close to my heart because I had pre-eclampsia and HELLP syndrome in February 2014, when I was just 24 weeks’ pregnant. I thought I was very knowledgeable about pregnancy, but I did not think pre-eclampsia could strike so early, and I had never heard of HELLP syndrome before.
The only cure is for the baby to be born. My son Hugo was born by emergency Caesarean section when I was 24 weeks and four days pregnant. Sadly, he was too small, and premature, and died when he was 35 days old.
Since Hugo’s death I have raising awareness of these conditions. The video below was made for Roche, a medical testing and screening company who is launching a new pre-eclampsia test. They were looking for a bereaved parent to tell their story to demonstrate the devastating impact the condition can have.
Please take a few minutes out of your day to watch this video, and find out just how serious pre-eclampsia and HELLP syndrome are (more information about our story is below the video link).
I have produced this post to be shared – please do share it with whomever would find it useful (ie everyone!).
In case you haven’t heard of HELLP syndrome before, this is what it stands for:
- ‘H’ is for haemolysis – this is where the red blood cells in the blood break down
- ‘EL’ is for elevated liver enzymes (proteins) – a high number of enzymes in the liver is a sign of liver damage
- ‘LP’ is for low platelet count – platelets are cells in the blood that help it to clot.
The symptoms of pre-eclampsia and HELLP syndrome include:
- Heartburn/indigestion with pain after eating
- Swelling, and sudden weight gain
- Shoulder pain or pain when breathing deeply
- Malaise, or a feeling that something ‘isn’t right’
- Pain under the right side of the ribs
- Headache and changes in vision
Women may not necessarily have all of these symptoms. Another symptom is high blood pressure and protein in your urine. These are checked during your routine midwife appointments, which is why it is crucial that you attend them.
If you are at all worried about anything during pregnancy, or if something ‘just doesn’t feel right’, call your midwife, or GP. Your midwife or GP shouldn’t mind, and if they do – insist.
If, in the rare event you do have pre-eclampsia or HELLP, the earlier it is diagnosed, the earlier it can be treated. This means you will get better quicker, and it could help your baby too.
Background to my story
The video has been heavily edited; I spoke for about 30 minutes and with the best will in the world, few of you will have the time to sit and watch a video that is that long.
To flesh out the story and give a bit more context, my pregnancy was completely normal until around 23 weeks. I developed what I thought was heartburn, gained weight, was breathless, and felt very emotional. These can be routine pregnancy ailments, and I thought I would just have to put up with them.
How wrong I was.
I shall be forever grateful that I had a routine midwife appointment a few days after the symptoms appeared. I was sent straight to my local hospital, where I was diagnosed with severe preeclampsia and HELLP syndrome. I was stabilised, and two days later I was sent to a specialist hospital two hours away from home because I was so ill and our baby so premature.
Hugo was born the day after we arrived by Caesarean section. The team that was looking after me was concerned that my condition was deteriorating, threatening the lives of both me and my baby (I later discovered I was on the brink of multiple organ failure). I was put under a general anaesthetic. My partner Martin had to wait outside theatre, terrified that he was going to lose us both.
Our son was born, tiny but fighting. He was taken to the neonatal intensive care ward, and I to the adult general intensive care ward. It was about 30 hours before I was able to see Hugo because I was too sick to be taken to him, and he was too sick to be taken to me. When I met Hugo, the consultant encouraged me to put my hands in the incubator and he gripped my finger. It was the best moment ever.
Hugo did not have the brain or bowel problems the neonatologists warned us about before Hugo was born. However, his lungs were in bad shape and when he was three weeks old he was diagnosed with chronic lung disease. Every possible treatment was tried, but failed. Our feisty boy (nicknamed Hugo Boss by his nurses) tried so hard to come home with us.
Sadly, on March 27 2014, the doctors said all options had been exhausted. Hugo himself told us he had had enough, and he died in my arms later that day. He was 35 days old.
The day after, Martin and I made the long journey back to our hometown, empty handed.
We are heartbroken, devastated, disconsolate. We love and miss our Star Boy so much.