HELLP Raise Awareness

Hugo and I enjoying a cuddle

I had to give birth to my beautiful son Hugo 16 weeks early due to HELLP syndrome and severe pre-eclampsia. This rare pregnancy complication nearly claimed my life, and took the life of my precious baby, Hugo.

I had never heard of HELLP before my diagnosis, and my family and friends had not heard of it either.

While nothing more could have been done to help Hugo, who fought for life for 35 days, HELLP is so serious I would like to raise awareness of it in his memory.

After all, it is impossible to know the symptoms of a condition you don’t even know exists.

The letters in the name HELLP stand for each part of the condition:

• ‘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 syndrome is usually a complication of pre-eclampsia. Like pre-eclampsia, it can happen only in pregnancy. It is most likely to occur immediately after the baby is delivered, but can appear any time after 20 weeks of pregnancy, and in rare cases before 20 weeks.

The only way to treat both conditions is to deliver the baby as soon as possible.

The symptoms of HELLP syndrome are outlined below. I have elaborated on them with my own experiences in this separate post.

• 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
• Bleeding

Other signs of pre-eclampsia include high blood pressure and protein in the urine. This is why it is vital pregnant women attend their routine community midwife appointments, as these are always checked.

Action on Pre-Eclampsia also has more information about the signs and symptoms of HELLP.

Many of the symptoms in the list above are easy to confuse with common pregnancy discomforts. I would like to balance raising awareness with not frightening pregnant women, or giving them more to worry about as for most women, they will be genuine pregnancy aches.

Therefore, the most important message is:

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.

All it takes are a few simple checks (that could include taking your blood pressure, dipping your urine sample and checking your baby’s heartbeat). This is most likely to help put your mind at rest, and you can go home and look forward to your baby’s arrival.

If, in the rare event you do have something like 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.

Fortunately, I had a routine 24 week community midwife appointment just a few days after the symptoms appeared. I had made a mental note to mention the discomforts I had recently developed, and especially to ask for a stronger heartburn medicine as regular over-the-counter supplies were doing nothing for me.

My midwife was vigilant, picked up on my high

Me, my partner Martin, and baby Hugo

blood pressure and protein in my urine, and combined with the other symptoms I’d complained of sent me straight to hospital.

I had the best-possible treatment the NHS had to offer.

Hugo had to be delivered to prevent my organs failing – I would have died, and Hugo would have had no chance at life.

I am dedicating my focus to HELLP syndrome because more people have heard of pre-eclampsia – but if you haven’t, you can read more about it on NHS Choices or The Pre-Eclampsia Foundation (the latter is from the US).

Pre-eclampsia affects about 5% of pregnancies, and severe cases afflict about 2%. An smaller percentage will develop HELLP, and the number of women who will develop pre-eclampsia and HELLP at 24 weeks as I did, is even more minute.

Maybe I was just unlucky to get HELLP, but I am also due to have tests to see if it was caused by an underlying issue such as an auto-immune condition or blood clotting disorder.

HELLP is a devastating condition. The only cure can have tragic consequences for the baby, as it did for my Hugo. I hope raising awareness of it can help another woman and her baby, in Hugo’s memory.

I should be 33 weeks’ pregnant today. I should be looking forward to meeting my son, rather than visiting his grave. I should be dreaming of our lives together, rather than experiencing flashbacks about his death, and nightmares about being guilty of killing my baby.

This is one small way of helping me deal with the infinite sadness that I feel; the loss of my baby and of hope for the future, at the rage I feel towards my body for having a meltdown and failing to protect my much-wanted, much-loved baby who I miss so much.

Please share this information with your friends and family.

Hugo enjoying a comfort hold from me.