Tommy's guest blog, 28/12/2016, by Sarah Lord
Sarah Lord was 35 weeks pregnant with twins when her frightening experience with HELLP syndrome began.
Whilst Sarah’s twin boys were fighting the effects of their early births in the Special Care Baby Unit and Neonatal Intensive Care Unit, Sarah was waging her own war in Intensive Care.
HELLP syndrome is a severe form of pre-eclampsia, and is potentially extremely dangerous, even life-threatening.
Sarah got in touch with us at Tommy’s because she wants to make more people aware of this condition by sharing her incredible experience.
Here is her story
"Can you take me to Addenbrookes?" I tentatively asked the ambulance driver. "We are not supposed to take you there because Harlow is closer, but just this once…"
As well as this being one of the last things I remember for the next 2 weeks, I would later discover that moment of clarity (amongst the blood, terror and confusion) essentially saved my life.
I was 35 weeks pregnant with twins, was bleeding heavily and being rushed to hospital in an ambulance was not exactly how I expected my birth experience to start.
Admitted to the Delivery Unit at the Rosie due to serious postnatal complications I have little recollection of the events that followed.
The memories I retain are like snapshots, Polaroids of vanishing, unconnected moments, caught and faded by sunlight.
I spent 2 days on the Delivery Unit, after considerable bleeding, my waters breaking and the baby’s heat beats dropping I was given an epidural. I do not remember having the epidural.
At this point some women who can remember theirs may say, 'Who cares, it's horrible anyway?' Well there is that I suppose…
However, for me having my children was an experience I know nothing about, it’s a bizarre mixed up memory that I would give almost anything to get back.
I look back now and think: Did I sign a consent form? I do not know. Was my husband there? I do not know. Was I wearing a bra? I don't know. I know wearing a bra is completely irrelevant, however, within context it blows my mind that I don’t remember.
I delivered by emergency C-section on Sunday 11th December, at 4.58 and 4.59pm consecutively.
In theatre I vaguely remember hearing one of the babies cry and turning to my husband to see him smile, for that second it felt like everything was ok… That feeling was to be short lived.
My husband spent brief moments with our baby boys before they were rushed to the Neonatal Intensive Care Unit (NICU) and Special Care Baby Unit (SCBU).
Tyler (twin 1, 4lb 13oz) was admitted to the NICU primarily because he was a preemie, at that time there seemed to be no other complications. Milo (twin 2, 5lb 3oz) on the other hand was having difficulty breathing and needed to be ventilated immediately.
It was while all of this was going on that I suffered a postpartum hemorrhage and lost 4 liters of blood.
Strangely, as I laid there watching the floor become awash with my own blood, (apparently) my blood pressure stated to go up and this is where being at Addenbrookes was key.
If you lose half the blood in your body, your blood pressure should drop. Mine was rising and the very experienced staff quickly kicked into gear.
I was later told by my consultant that had I been at a smaller/different hospital I would have most certainly died as the syndrome I was suffering is so rare... I believe this is when tests were run and it didn't take long for HELLP Syndrome to be diagnosed.
HELLP Syndrome effects 0.2% of all pregnancies and has a 25% mortality rate.
It is a life-threatening pregnancy complication usually considered to be a variant of preeclampsia, usually occurring during the later stages of pregnancy, or sometimes after childbirth.
HELLP stands for:
H is for haemolysis -This is where the red blood cells in the blood break down.
EL is for elevated liver enzymes - 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.
So while the C-section was essential to save the twins lives, I almost bled to death due to the dangerously low nature of my platelets.
I recall laying on the delivery table and knowing that I was bleeding. I knew the surgeons could not stop it and I could almost see the dark fog creep uneasily across everyone's consciousness, clouding the sense of 'real-time' and giving rise to an air of authentic panic within an environment usually fronted by unshakable professionals.
I became cold, very cold, very quickly. It was then I started convulsing and it was seconds before I blacked out.
In those seconds before 'lights out' I had a clear realisation which came with a sense of absolute acceptance and peace. There was no light at the end of a tunnel it was simply a very clear realisation I would probably would die, right then, right there.
I remember talking very firmly to myself: I said 'Listen Sarah, you might die, you might die right now, do you realise, do you know what is happening?' I lost consciousness seconds later.
Further seizures followed from which I was lucky not to have suffered brain damage.
To halt these seizures I underwent treatment with Magnesium Sulphate and this is one thing I remember quite clearly, probably because it is so horrific that nothing can erase it from my memory.
Mag Sulfate is injected directly into a vein and gives rise to the most horrible feeling I have ever experienced, it is practically indescribable.
The instant the nurse started pushing it through my vein I felt like I was on the hottest snubbed in the world, like I may catch fire, vomit then die all at the same time.
I begged for them to stop as my husband held me down, his hands grasped both my arms just below my shoulders in a way that I knew it was life or death.
I recall looking up into his eyes, the pain in his face was unforgettable. From there I started to shake uncontrollably and vomited all over myself.
I became freezing cold and was put in a Bair Hugger as my temperature dropped dangerously. I think it was then I was given my first blood transfusion, and transferred to Intensive Care where my liver and kidneys started to shut down.
My husband said he stood by and watched me blow up like a balloon and turn completely yellow as my body failed to process its own liquids. I was in danger of my brain drowning within my skull.
Intensive care is a very strange place, day and night become one and the same.
Everyone in there is waiting, waiting for life or death, it is a still and very silent place. Nurses slip like ghosts between rooms, I call them ghosts because I remember them being sort of transparent and silent.
After a few days in ICU I began to hallucinate. I was convinced that there were people under my bed talking about me and that our beloved pet bulldog was in the corner of the room wearing a silk scarf.
I didn’t want the doctors to know about these hallucinations as I was convinced that they would think I was going mad, which would only delay me being with my babies, so only told my husband…
What I didn’t know was that as my kidneys were failing, I was experiencing Encephalopathy, a condition that causes brain malfunctions which leads to confusion and disorientation.
I was put on a restricted fluid intake which meant I could only suck on one ice cube every few hours, meanwhile via catheter I was loosing 1.5 litres of water every hour!
There is so much stuff that happened in-between - I could go on forever and I'm not sure how to cut this short. I had moments of clarity where I asked for scrambled eggs and a gynecologist.
I remember these moments because I was angry. I was angry that I wasn’t on the ‘normal’ word where all the other women go with their newborns.
I was angry because I was in ICU they couldn’t give me scrambled eggs… I felt like the staff were really casual in refusing my requests (which made me more angry) – however looking back, I was so close to death it was obvious none of these things were possible.
It was then all my veins collapsed, they could not get lines into me and the lines were the only things keeping me alive. I ended up having one put surgically into a main artery in my neck.
Afterwards I looked down at my arms which were marbled with bruising from shoulder to wrist and feeling a strange sense of detachment – all I could think was that I looked like a dead Pheasant I once saw hanging in a butchers window.
From there I was given kidney dialysis and more blood transfusions, the renal team offered conservative management and everyone just had to wait to see if I would make it.
Nearly a week later, finally I was wheeled to the SCBU on special giant bed complete with beeping machines, meters of wires and my own personal nursing team.
I have a photograph of my first meeting with Tyler, my tiny little boy. Sadly, I have absolutely no recollection of it. This for me is the saddest part.
Other women talk about the moment they first held their baby in their arms, the feeling it gave them – the ‘love rush’. I am never going to know what that is like and it hurts.
My recovery was slow, at first I could not walk at all and was in huge amounts of pain.
My whole body ached as I struggled on and off the hospital bed hooked up to machines. I fell to the floor numerous times and became entangled with wires, unable to pick myself up, feeling defeated, disappointed and really angry.
All I wanted to do was be with my babies, that desire was so strong it was the reason I fell off the bed in the first place –I was trying to get out of my room and somehow find the NICU! I have no idea what I was doing!
Anyway, slowly I became strong enough to walk unaided if only for a short distance and that was enough for me.
I thought 'right, I am getting stronger, I am getting out of here!'
I obviously wasn’t ok, but my desire to be at home with my babies was overwhelming.
Milo was due to be discharged and I was adamant that we would leave the hospital together for Christmas. Which we did – however leaving the hospital with only one of your two babies is basically beyond horrific, I have no words for how we felt on that day.
Unfortunately Tyler had been diagnosed with NEC (Necrotizing enterocolitis) which in basic terms means death of the intestines - he could not come home.
He was nil by mouth for the first 4 weeks of his life. He had machines, tubes and wires coming out of every part of his body. He screamed in pain every time the medicine went into him (the doctor said it burns).
We just used to stand there holding Milo and watch in horror as they strapped little splints to his arms to keep them still and straight so the line wouldn’t kink.
One time he became so distressed he ripped off his own sleep suit – it was utterly horrible. The reason he was nil by mouth was to give his intestines the change to stop dying – and eventually they did 5 weeks later. He was a fighter!
It was snowing the day we took him home from hospital, I stood in the parents room watching the snow fall waiting for him. I wanted to feel happy but I didn’t.
My birth experience stolen from me, I had twins with ongoing health issues and a really crappy start to their lives - I was sad.
Sobbing I stood there alone while repeating the same conundrum in my mind… If having children was ALL I ever wanted why did it feel so horrible and sad?
I didn’t know at the time but I had suffered Post Traumatic Stress Disorder and it has taken 5 years and EMDR therapy to come to terms with the whole experience.
I’m not sure how to finish this story… The twins are now 5 they are happy, charming and beautiful. They blow my mind on a daily basis with their courage and resilience.
I lost my hearing as a result of HELLP syndrome so now wear hearing aids.
However, when you have touched death as I have, you realise that being alive is the most incredible thing that should never be taken for granted.