HELLP Syndrome – Part 1

Finally I’m ready to blog my ordeal, so following on from The Gory Birth Story….

Having just given birth to two beautiful and tiny, but healthy, baby girls, the natural motherly instinct is to cuddle them and cry with overwhelming happiness and relief. But as I look through my maternity notes I see the sickening words in black ink; “Mother not feeling able to hold babies”. It breaks my heart reading that and makes me feel like such a bad mum.

The truth is I don’t remember anything after the birth. It’s a blur. I don’t even know why it’s a blur. Whether it’s because I slept or because I was so ill, because I was in so much pain, lost so much blood or because it was so horrific my mind has blanked it out. I had this crippling pain under my ribs, that was worse than childbirth. They tell you the pain goes away once the babies are born, but that’s when mine got worse. I had no idea that it was classed as “upper quadrant pain” (that I’d been having for weeks).

After the vomiting and haemorrhaging which lasted over eight hours, (I lost 1050 ml blood during labour and more after), hubby says I slept. I don’t know how on earth I could have slept and I don’t know how long for, but apparently he spoke to my mum on the phone and told her the twins had been born. She was in Croatia on holiday and cried happy tears down the phone. I don’t think hubby or the doctors realised at this point, that I was telling the truth when I said something was wrong. I was seriously ill and they hadn’t discovered it. I have no recollection of what happened between giving birth to Tiny and 1am the following day.

I’m trying to piece together the birth by texts and tweets, so everything in BOLD is a text or tweet I sent.

1:02 pm “I’m in so much pain. I’ve lost loads of blood. I’m not well enough to even hold the babies. Everything has gone so wrong. I’m a mess ”

1:31pm “I’m in too much pain to sleep, too ill for visitors & keep vomming up my pain killers”

5:58pm “I’ve finally stopped puking. My Pre-Eclampsia is causing liver and kidney failure. I’m nil by mouth and on hormone drips to stop me bleeding. I’m feeling very groggy but I’ve finally held my babies. They are so tiny”.

When Hubby had gone home to bed (under my orders – he needed sleep!) I sent him this text: “Babe I can’t cope. I’m in so much pain. Lost loads of blood. Had chest xray. In agony”.

(Look at the size of hubbys hand in relation to the size of tiny Tiny!)

On May 15^th at 1 am I was woken up by an Anaesthetist. He told me he needed to take me to theatre to fit a central line in sterile conditions. I had a central line once before, when I had Septicaemia from a kidney infection six years before. I knew that a central line was a long tube, that gets stitched into your neck and goes down your main artery, into your heart, and has little taps on the outside (for them to put drugs in and take blood out). I remembered that when they fitted it before, they sedated me and gave me local anaesthetic and I didn’t feel a thing. This time though, he explained there would be no sedation as I was high risk. He sat down with me and calmly started explaining the risks to me. I felt like I was barely awake, my head wasn’t there and he was talking about Pneumothorax and chest drains. Things I’d only heard about from the dramatisations of Holby City. He also talked about my heart rhythm being thrown off pace and him “tweaking the line” to get the right rhythm back. He talked of infection and other complications, but my mind was still stuck on his words about no sedation or anaesthetic!

Minutes later I was laying in theatre with my head to one side and a sheet over my head (this does nothing to qualm the death fears). I was holding a really kind midwifes hand and listening to my own heartbeat, bleeping loudly from a machine nearby. I held her hand as though she were an old friend because at that moment my family, friends and husband didn’t even know I was in theatre and I felt so alone. Part of me knew what was going on, but part of me didn’t have a clue and I was terrified. Despite being injected with a “blocker” which was supposed to numb the pain, I felt every single sharp stab of the needle, every prod, poke and tug in my neck as the line went in, the warm trickle of blood down my neck and every sharp prick and pull as they stitched the outer components of the central line into my neck. It was painful but my focus was on my heartbeat, which panicked me every time the rhythm changed (and it did) and on the horrible feeling of my windpipe feeling restricted, where there was so much downward pressure being applied to my neck. When it was done, I noticed there wasn’t just me, the midwife and the anaesthetist in the room, but a whole team of people. They were all talking and they put some music on, the mood was calmer and more relaxed and they were discussing whether to move me to recovery, intensive care or high dependancy.

(My central Line)

I got wheeled on my bed to the high dependency unit (HDU) on the delivery suite and there I would have a midwife constantly, who was not allowed to leave the room. I was hooked up to machines that bleeped my heartbeat constantly and showed my pulse, blood pressure and hydration levels. I remember having a scan on my neck to check the line was in place. I had stickers and wires coming from my chest, things regularly going in or out of the line in my neck, plus a canula and drip in the line in my arm. I also had a catheter as I wasn’t allowed out of bed to pee. I was a mass of wires but remember feeling so happy and relieved when I was finally able to hold and breastfeed my gorgeous babies; and overwhelmed with emotion when hubby and Bunny came in to see me. My 5 year old was such a big brave girl cuddling me, when I had all those things attached to me.

Me breastfeeding the twins – You can see my blood transfusion on the right (mentioned later in this post) and my sats, heart rate and hydration level (-5 in this pic). Excuse the disgusting yellow-white colour of my skin (I looked whiter in real life)!

I don’t remember exactly when they told me what was wrong with me but It turns out my Pre Eclampsia had been masking a far more sinister illness. I had a condition called HELLP Syndrome (short for Hemolysis, Elevated Liver enzymes & Low Platelet count) which was causing my liver and kidneys to fail. The pain in my ribs… was actually not my ribs, but my liver. The reason for monitoring my heart… After attacking the liver and kidneys, HELLP Syndrome can progress to the heart and the brain. The high blood pressure can also cause seizures and a coma, so the machine automatically took my bp at preset intervals. HELLP Syndrome is really quite rare, but very serious and research shows that around 25% of sufferers die from it.  I found it quite strange because a few weeks before, when I was told I had Pre-eclampsia, I mentioned HELLP Syndrome to a friend, as I noticed my platelet count was low (I knew about platelets from having Leukaemia as a child). My friend told me not to worry as my doctor would have picked up on it… but they hadn’t.

Here are some external links for those of you who’d like more information on HELLP Syndrome.

Wikipedia

Pre Eclampsia Foundation

On day 3, my mum landed back in the UK and came to visit me in HDU which was a great comfort to me.

One doctor (who I will refer to as The Hot Doctor coz he was really cute and really kind) came in to see me in the morning and said “You put a lot of us to work last night so we are hoping to make you our success story”. I hoped so too. I felt so ill.

Having been nil by mouth from the moment my induction had started, and having not eaten before that, I’d been over 48 hours without food or drink. My hydration levels had dropped right down to -20 (which I believe is quite dangerous). I wasn’t allowed to drink due to them needing to monitor my kidney function. Only measured fluids (by drip) were allowed and at a ridiculously slow rate. Not being allowed to drink can feel like torture. One of the midwives let me suck on a fruit pastil to make me feel better. It sounds trivial, but the friend who gave me those fruit pastils to take in with me, will never know how grateful I was to have them! So naturally when they told me I was allowed a cup of tea and some food, I was elated. My energy reserves were pretty low considering I’d given birth a day and a half ago and had very little sleep. Hospital food, normally rather gross… tasted like the best meal I’d ever eaten!

Being allowed to eat and drink made me feel a bit better, and having my mum visit (so I could have a good cry) was a great feeling if relief for me. This turned out to be a good day where I felt well enough that I was able to breastfeed the twins. I didn’t have my milk in yet so the midwife hand expressed a few mls of colostrum for me to give the babies by syringe and eventually they brought me a preemie breast pump to express colostrum and the beginnings of my milk.

My bloods were being taken and tested every few hours. My Kidney results were starting to show some improvement. I had clearly allowed some optimism to enter my mind, as I text Hubby saying, “It’s just my liver thats standing between me and recovery”.

Most of those first few days, the babes were being cup fed; which was cute to watch, but rendered me helpless and I missed holding them and feeding them. I cried a lot as I felt like a failure for not being well enough to take care of my own babies and I was so scared about what was happening to me.

I only got to watch while Hubby and The midwife gave the twins their first bath.

The babies however, were thriving. By now they had been moved from sleeping together on the heated resuscitaire, where I couldn’t quite see them, to sleeping together in a crib next to my bed where I could gaze lovingly at them all day and night. It was almost as if they knew I was poorly, because the whole time I was in hospital, they barely cried.

Despite getting the greatest care imaginable and having the most incredible and kind midwives, every second in there felt like an hour and every hour like a day; except when it came to sleeping, which I just didn’t seem to do at all. My memories of my time in hospital are just a haze of constant pain, tears, fear and feeling weak and helpless. My mind played tricks on me and it took a longtime to grip an understanding on simple things. I had to have everything explained to me in simple terms and I’d fall asleep halfway through someones sentence and theyd have to start again. One time I actually got it in my head that one of the midwives was trying to make me sicker and was conspiring against me with one of the doctors. I told myself this was pure insanity and never voiced it. Those thoughts show how ill I really was because my midwives and doctors in reality were all fantastic, professional and the most caring people I’ve ever met!

Every little procedure, no matter how minor, made me think I was going to die. The thought of leaving my three children without a mummy broke my heart. It was unthinkable. The doctors doing ward rounds came to see me every couple of hours and I had blood taken every couple of hours to check my organ function. Due to my organs not functioning correctly, my body wasn’t reproducing iron. Having lost so much blood in childbirth, my Hemoglobin was low at a level of 8 instead of the normal 12 – 15. This meant I’d need a blood transfusion. The problem (and more fear) with this…

…I have an allergy to blood transfusions!

For HELLP Syndrome PART 2 click here