(Since I revealed my pregnancy a couple of days back – A LOT of women who’ve also sadly lost babies have been getting in touch with me asking if I ever found out what was wrong. And the answer is – sort of. As someone who knows what it’s like to scour the internet for hours, looking for answers – I want to help out if I can by sharing my own personal experience. I must point out however (although it’s fairly obvious!) that I have no medical knowledge and am in no way a medical expert! But you never know, the little knowledge that I have picked up may help you, or someone you know. I hope it does. )
KILLER is such a hostile word. There’s no way it can look or sound nice is there?
But bizarrely when I discovered I had elevated ‘killer’ cells back in March, I was relieved and actually a little bit over the moon.
After my second miscarriage I was lucky enough to be thoroughly tested to find out what was going wrong. I was tested and so was our baby. The NHS protocol is testing after 3 losses, but my amazing consultant insisted on getting me tested after the second time, and I’m eternally grateful that he did.
It’s odd, and I don’t think I’ll be alone in this but a big part of me WANTED something to show up, something to come back wrong. At least then we knew what we were dealing with and could face the future and reality.
But as my many blood tests came back in dribs and drabs it became apparent that I was fine. No blood clotting issues. No weird illnesses that I didn’t know about. Then eventually we got the tests from the baby back. I’ll never forget the moment our consultant told us that our baby was ‘perfect’ and in fact a ‘she’. His actual words were ‘there is no reason why you should have lost this baby.’ Which broke my already broken heart a little bit more. He then went onto say the only other thing he could think of was something called killer cells. Because of my very close and rather obsessive relationship with Mr Google – I’d already done a fair bit of reading on the subject. As far as I was concerned if this was our last shot at finding out what was wrong – I couldn’t get the blood test done quick enough.
It cost almost £600 as it can’t be done on the NHS and revealed that my killer cell count was 12.6%. According to my consultant they like it to be under 10%.
So what on earth does it mean to have elevated natural killer cells?! Erm, not sure really! The way I understand it, is that we all have killer cells in our body and we need them to fight nasty illnesses and disease. But sometimes they go a bit crazy and into overdrive. I imagine them looking like little ninja minions for some reason – whizzing round my body biting and eating everything?! Ok, that’s just my crazy imagination getting the better of me there! One of the common things to look for with killer cells is not ever getting ill. And when I look back, I’ve hardly been ill over the last couple of years. Even if I did get a cold or a sore throat, it would be gone in a day or so. Which is a big contrast to how I used to be – ill ALL the time! But about 5 years ago I got a very bad case of Glandular Fever, and after that I never seemed to get ill anymore. I even remember saying to my mum that I felt my immune system had reset itself. Again, I am no medical expert – but you know your own body, right?
Anyway, in the case of pregnancy – if you have elevated killer cells, my understanding is that they mistakenly believe the pregnancy and foetus is something bad, and quite literally attack it until it dies. Which makes sense to me in my case. I never actually ‘miscarried’. Instead my babies’ hearts just stopped beating and the grim reality was only picked up on later ultrasounds.
So the day I got the news from my wonderful Consultant (he is like God to me) that my killer cell levels were indeed raised, and he believed that to be the cause of my losses – I was just so so happy.
The tough thing about this whole ‘killer cell’ issue – is that it seems to be hotly contested and not widely recognised by the medical profession. A number of GP’s and midwives I’ve spoken to have never even heard of it. Many also think it’s total boll*ks. Hence why you won’t get treated on the NHS. But it makes total sense to me, and when you’re completely out of other explanations – it’s definitely worth considering.
So the plan of action was to just get in touch with my Consultant the next time I was pregnant – and in his words ‘the earlier the better’. Luckily enough I discovered my news very early on (thank God for First Response!) and made a private appointment with my Consultant before I was even 4 weeks pregnant. He put me straight on steroids to suppress my over active immune system, aspirin to thin the blood, and Progesterone pessaries to support the pregnancy. At six weeks after a scan and hearing a gorgeous healthy heartbeat, I was then also prescribed Clexane injections – to also thin the blood and prevent any possible clots. Initially I believed this was just a precautionary measure – but he later told me that killer cells can actually make your blood a bit sticky – which can in itself lead to miscarriage.
I’m not going to lie – some of the side effects of the drugs were fairly tough at times. The steroids made me manic and a complete insomniac, especially for the first few weeks. Some nights I literally didn’t sleep AT ALL, which is great when you do breakfast radio, not! I was also warned that I would probably put on weight – and one of the side effects in the leaflet was delightfully put as; ‘you may develop a rounder, fuller face’ – nice! But I actually lost weight on them. No idea how. They also gave me terribly achy stiff knees, so I felt like a 90 year old woman! Walking was very painful and slow. Poor Isla our Labrador got much shorter walks from me for a while, and exercise was just out of the question. I blamed a lot of my mood swings on the steroids too – but let’s face it, hormones make us women fairly crazy, so who knows what was what with all that!
As for the daily Clexane injectons – well that became Jay’s department. We got into a little night time routine of me icing my tummy for 15 minutes in bed, before Jay did the injecton for me. I think he actually quite enjoyed the responsibility because it made him feel useful, bless him. I’m not gonna lie – they bloody hurt like hell! And some of the bruises made me look like I’d gone ten rounds with Rocky. But you know what, it was all more than worth it, and I’d do it all again in a heartbeat.
The final and most bizarre thing that I had to do to fight the little ninja killer cells in my body and try and protect my growing baby – was soya infusions. This involved three trips up to Harley Street to a private nursing service to have a bag of soya and egg white liquid pumped into my veins! I still haven’t really got a clue how or why it works, but I did it anyway. If you google it actually, you’ll find articles on women who swear that it gave them their miracle babies. The treatment took about 2 hours a time and cost just over £100. It was completely painless and I even fell asleep in the room one time and woke myself up snoring in front of three other women – again the joys of the 4am starts! There was another option of blood transfusions but they cost over £1000 a go, and from my research carried a risk of contracting various diseases – which I was not prepared to take.
So who knows – did the combo of a weird mayonnaise type mixture, painful injections and steroids help my baby grow? I’ll never really know the answer to that question. All I know is that I’m here, at 20 weeks with a healthy baby kicking away inside me as I type. I’m still paranoid every single day and will be until it’s in my arms. But I will be eternally grateful to my consultant who did everything he could to keep my baby alive.
If you are looking for answers after miscarriage, my best advice is find a good consultant and KEEP ASKING QUESTIONS. It can be an awfully frustrating journey with some many set backs, waiting times and periods of just not knowing. But arming yourself with knowledge and not taking no for an answer will help you I promise. Here’s to many beautiful rainbow babies.
Some pictures from my crazy journey
All my used Clexane syringes. Still trying to work out how I dispose of them!
The MOTHER of all bruises from an injection! This one was a belter …
Happy face getting my first soya infusion in Harley street, 4 weeks pregnant
The magic mayonnaise mixture
Straight into the veins – sorry if you’re squeamish!