This is the brave and moving story of Angela and her battle to survive HELLP syndrome and how it has affected her life. It is very difficult reading and helps us to see how important it is to listen to women during and after birth.
Please be aware that some stories may trigger difficult memories and emotions so remember your own self care as everyone will be at different stages of healing.
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Thank You
My story
Middle of February 2016, my ankles and legs are enormous, skin stretched, dry and bleeding. My right side of my face is swollen and I can barely see. I am under midwife and consultant care. I am told these symptoms are ‘normal’ in pregnancy. I accept this as what do I know, I’ve never been pregnant before and put my trust and faith in these people wholeheartedly.
End of February 2016, and the beginning of March 2016, I finished work two weeks earlier than planned. I can barely walk with my legs. I now cannot see out of my right eye. I feel like I can’t breathe. I ring the midwife as I am unable to walk that far to the surgery, surely this cannot be ok? I am told this is still ‘normal’, swelling is normal and the baby is just pushing against my rib cage. Besides I have no protein in my urine.
15th March 2016, I gave birth to my beautiful baby girl, ventouse delivery as her breathing was becoming difficult. I have stitches from the episiotomy. My blood pressure is high so they give me a tablet to help. 4 hours later my blood pressure is still high so I have to stay the night. The next day, I am in the hospital until 8 pm. My blood pressure is just within normal but I have some unusual pains. We go home.
17th March 2016, I get up at 6.30 am, and take my 1 day old daughter downstairs. I still cannot breathe well. At about 7.45 am, I start to feed her, by 8.00 am I have pain underneath my ribcage, predominantly the right side which feels like a knife stabbing and twisting, to the point of it taking my breath away. I scream for my husband as I am unable to hold my daughter, she is crying at this point.
I know something is horribly wrong, and that is why for the first time in my life, I have never had a day off sick from work in 15 years! I tell my husband to phone an ambulance. As I am still breathing at this point, they won’t send one.
My husband drags me and our 1-day old baby to the car, then to the surgery at the top of the road as he fears I won’t make it as far as A&E without being seen. …he is right. Again, he drags me on my hands and knees into the surgery begging for help. I don’t remember much at this point other than searing pain, unable to breathe, an almighty heavy feeling in my head and the resuscitation machine going….. the world blacks out.
Next thing I know, I take a breath of life and am in a side room from intensive care. What happens next I can only describe as barbaric. I am in multiple organ failure along with postpartum cardiomyopathy,(heart failure) but this is not yet known!….
There are about 10 people around me, doctors or nurses, who knows. I can see my husband. At this point, I can only move my eyes and my finger. Everything now happens at the same time, they are trying to save my life. My oxygen mask is removed and tubes are being pushed up my nose, someone is feeling my chest and under my rib cage which is excruciating (as my liver has failed/ruptured), people are putting cannulas in both arms, my hands, my feet and my neck. A blood gas test is being performed. Blood is trying to be taken by several different people from my arms but I’m not giving any up. They move to my feet.
They think I’ve caught an infection from my stitches, so someone is putting a speculum inside me whilst I can only assume that it is a consultant barking orders at her to move the magnifying thing around. This is so unbelievably painful. I’ve just given birth and had stitches inside and out.
I am given no pain relief at this point as they have no idea what is wrong with me and do not want to risk anything.
Further people pour in, they insert a catheter as I have no control over my bladder and I have lost almost 4 litres of water in 45 minutes. They cut away my clothes on my chest and put what seemed like a million wires all over my chest and electrodes.
Next thing I know I am being pushed out of the room and the porters and doctors are running with me in the bed to a scan room. I am scanned. I later find out that this is a CT scan and an echo for my heart is also performed.
I am rushed back to the side room and I hear the doctor explaining to my husband that I may need a platelet transfusion as my platelets are dangerously low. The percentage he gave to him of my survival I don’t like to think about but I knew I was dying.
I am told to say goodbye to my daughter, who is pushed to my face as I cannot move. She is not able to be in ICU with me. I am then taken into the main intensive care unit and lots of people start inserting tubes in my cannulas and I just remember seeing bags and bags of drugs hanging above me.
My family are called in, if they cannot improve my platelets, I don’t stand much chance. At 3 am in the morning, doctors gathered around me to tell me had severe HELLP syndrome and problems with my heart. The HELLP syndrome had caused multiple organ failure. HELLP syndrome is the next stage on from pre-eclampsia. Postpartum cardiomyopathy has made fluid build up in my lungs and heart and the pumping mechanism of my heart has been severely affected.
On the positive side and by some miracle though, my platelets are slowly improving. I have two hourly blood taken and lots of other checks. Still not out of the woods yet though.
I spend 5 days in intensive care which I can only describe as the most harrowing of my life, not just what happened to me in there on a daily basis which I won’t go into, but also being surrounded by incredibly ill people as well as constant death. I felt every shred of dignity I had left leave me, but they were trying to keep me alive. Dignity doesn’t come into it!
I have had several seizures whilst in intensive care and they are waiting for my kidneys, liver and heart to show some improvement. When under control I am moved down to HDU and monitored closely, drugs still being poured into me on a daily basis.
“I am eternally grateful just to be alive and be able to see my husband and daughter”.
The rest of my journey is one of recovery and all the things that this entails, learning to walk again, be able to eat etc. I could probably write a book on this alone.
Unfortunately, several months down the line and my liver has still not recovered and I am living with postpartum cardiomyopathy (heart failure) along with a bucket load of tablets, however, this will not break me. I am eternally grateful just to be alive and be able to see my husband and daughter, even if it means the hospital is like my second home!
If anyone takes anything from this story, it must be to trust your instincts and even if everything turns out to be ok, it is better to be checked than to let it progress to something horrendous. If there is any kind of swelling or difficulty in breathing, just refuse to leave until they do other tests! There may not be a ‘fix’ for pre-eclampsia/HELLP syndrome but they can seriously reduce the damage to mother and baby if picked up.
I cannot change what happened to me but by demanding to be taken seriously, a baby’s life and mothers can be saved or made considerably better if we raise awareness.
I am eternally grateful just to be alive.