Today, our wonderful NHS turns 70 years old. I want to say thank you, in so many ways, but where do I even begin?
From the births of newborn’s in our families, to the NHS managing the old-age of our Grandparents; through to my Dad and my Father-in-Law both undergoing Triple Heart Bypasses; the NHS has saved the lives of many dear to us.
Over the past year alone, both our families and our friends, have spent a lot of time in the amazing hands of our incredible NHS. James and I, ourselves, both spent time in hospital for our various ailments. I was in and out of hospital with many appointments and intervention and finally my operation for my long, long, long, Miscarriage, over the course of 3 months at the back-end of last year. We started our move to Manchester, this year, with a trip to A&E, resulting in James spending the night and day on a hospital ward on several drips. Bringing this up to recent days, very recent days in fact, my Dad went through his first Hip Replacement operation on Monday of this week. He was home by Tuesday evening. Miraculous. And mostly thanks to the care he’s received, no doubt. He’s literally just texted me “Slept through the night, good eh? Love Dad xxx”. He’s sleeping better than me, that’s for sure! Also, shout out to my darling Tessa who has been feeling the love and care of the NHS recently too.
During my own 32 years on the planet, the NHS has been there for me so many times, I wouldn’t dare to even count. From having my own feet ‘corrected’, routine appointments as a child and all the immunisations, the many chest infections, X-Rays and various types of Scans, chopping the top of my thumb off (at nursery with a potato peeler, hey, it was the late 80s, zero health & safety then pal!) Ear, Throat & Nose issues, having an Adenoidectomy aged 6, sodding Acne, orthodontic treatment and the horrible train-tracks braces I had for 3 years, treatment for Hay-fever, hearing-tests, eye-tests (and yes, I do need glasses), adult immunisations, The Pill and all the issues that come and go with that, my Smear tests, Endometriosis investigations, my anxiety, my pregnancy and the birth of Eli (oh and the aftermath that could have resulted in me losing my life), my Miscarriage. For every single ailment, no matter how big or small, how urgent or trivial, I have always been treated as a human being, treated with the utmost care, compassion and sensitivity. Even at my absolute lowest, my most vulnerable, with blood dripping down my legs, a Nurse ran to my aid and cleaned me up without batting an eyelid, then gave me a cuddle afterwards. NHS Nurses and Doctors have gone above and beyond their call of duty for me… for us as a family.
Oddly enough, James received a referral letter for a hospital appointment just yesterday – he will be seen at Trafford General Hospital here in the heart of Manchester; the place we’ve very easily fallen in love with and now call home. What’s the significance I hear you ask? WELL, low and bloody behold – on this day, in 1948, the NHS was born and launched at this very hospital.
5th July 1948 – The NHS is born*
When Aneurin Bevan (above), the health secretary, launched the NHS at Park Hospital in Manchester (today known as Trafford General Hospital), it was the climax of a hugely ambitious plan to bring good healthcare to all.
For the first time, hospitals, doctors, nurses, pharmacists, opticians and dentists are brought together under one umbrella organisation to provide services that are free for all at the point of delivery.
The central principles are clear: the health service will be available to all and financed entirely from taxation, which means that people pay into it according to their means.
The thing to also remember is, our wonderful NHS wouldn’t be able to function without SO MANY different people in SO MANY different roles. The Nurses & Doctors, Dentists and Optometrists, are of course central to the NHS, but then there are the admin staff, the porters, the cooks and the cleaners… and not forgetting all the many volunteers. You all deserve something a lot higher than a ‘medal’, that’s a certainty. Heroes. Inspirational. Wonderful. Wonderful. WONDERFUL PEOPLE. We are so lucky to have the NHS and everyone who works within the discipline. From the bottom of our hearts, we thank you all, and we are forever in your debt.
So I will sign off, with a heart full of love and admiration for our truly marvellous NHS – Happy 70th Birthday; AND MANY MOOOOOORE
It’s been a little while since I mentioned our Miscarriage. 160 days, in fact, since my last post on here about it all. Because you don’t need me to tell you, life just has to move along. Especially when you have an Eli AND a James to look after too (!)
Since the end of the miscarriage, so much has happened. I’ve had the most spontaneous evening with Harry Styles, The Retreat, Bonfire Night, Christmas, New Year (fresh slate), proposed move to Manchester (happening sometime, SOON!), followed by a stay in Manchester Royal Hospital (James, after a visit to A&E), a birthday surprise for my Papa and Mother’s Day. But here we are, almost half way into March. A month I’ve been desperately trying to not think about. But it’s here now and I have to face up to it. So by bashing this all out on the keyboard, I’m hoping I can get some kind of cathartic release.
So March. What’s the significance?
Well, my due date would have been, TODAY, 15th March.
So I knew that, at some point in March, whether that baby came early, or today, or indeed like their Big Brother, Eli, and arrived super late – we knew had prepared that to have a brand new baba, in March. Today our arms are empty.
But obviously, this is not the case. This isn’t what’s happening this March, at least.
Today, I’ve had messages of love and support and care and its been so nice. I’ve had the head tilt, which has cheered me up without anyone even realising (a la Richard in Friends, see my reference, here) (SIDE NOTE // does anyone else live their days through quotes from FRIENDS? I can’t think of a day when I didn’t reference it at least!)
How have I been?
Well, physically, I felt battered and bruised for a few weeks post-operation – really exhausted. I slept through the day a lot. Mentally, I was totally drained. But I had to keep going – especially for Eli. I also overate, no rhyme or reason, but I couldn’t stop eating. Boy am I paying for it now as I try and shift off the pounds! Though, I’ve lost 10lbs in 5 weeks, so I’m getting there slowly.
Cycle-wise, my periods returned, a few days out from when I expected and they are still a bit strange. As I mentioned lots before, my periods are exceptionally painful (Endometriosis) and usually with an excessive amount of blood loss. While the pain has been the same (!!) as before, the blood loss is somewhat scant. So I’m wondering whether some endometrial tissue was removed during the ERPC operation? Who knows – but my body is still keeping me on my toes.
FYI – just after the New Year I received my ‘invitation’ for my Cervical Screening Test. I went to book it and was told to wait until 3-4 months AFTER the ERPC, to allow for the cells around the cervix to regrow following a miscarriage. I had my Smear test last week – awaiting the letter back. But as usual, it was smashing, no problems with the procedure at all. It took around 2 mins, tops.
Following my operation I had a spate of infections (chest/ear/lung/so many colds). It culminated with a Spirometry Test and our darling Coco heading to a rescue centre to be re-homed. The diagnosis was COPD and I have a lung age of 61. Shockingly, I’ve never smoked and I’m only 31. Since Coco was re-homed however, my symptoms have dwindled and I feel much more healthy again! I’m sorry to say its all probably quite likely that I had a pet allergy 🙁 But I’m pretty impressed with my recovery and taking just one inhaler a day now. (Also, it goes without saying too – Mum’s ARE always right, damn!)
I became jealous, I guess, and sad – wouldn’t ‘luck’ just have it that so many friends (and IG strangers!) were announcing their pregnancies and births? Of course it would. Though, as it is fairly obvious, I do absolutely love a baba (I wouldn’t be craving my maternal duties again if I didn’t!) and it’s so wonderful to see these new babes coming safely into the world. I am honestly over the moon for everyone I’ve come into contact with who has told me of their happy news! But then I feel the intense guilt for feeling this sadness… part of me can’t help but think, this should also be us. We could be sharing our happy news right now too. Aren’t emotions bloody brilliant, eh?
Mentally – I’ve all over the place.
I’ve had a weeks and weeks where things have been great! Actually never better! But the closer we’ve come into March, the more vulnerable I’ve felt.
This week, I feel low and sad and diminished.
Without this being a completely sombre update, right now, I feel like I have this big black cloud hanging out with me – following my every move. I can’t shake it off.
I’ve had lots of tension headaches, back & neck (tension) pain and intense dreams – when I’m able to actually sleep, that is.
I confronted my inner thoughts last week, which involved a whole lot of sobbing my heart out – and vocalising exactly I’m how feeling. I’d bottled it up, probably since November. It feels better to share – even if the other person doesn’t say anything at all – just sharing, feels so good. Though, the only person getting the brunt of it all at the minute, is poor James. And of course, he feels all the feels too. A baby, our new baby, could have been in his arms, too, making him a parent all over again.
I didn’t have a follow up after my ERPC, I didn’t actually even speak to my GP about the trauma we’d been through. (Should I have? Should I have been sent an invitation for a follow up appointment of some kind? What happens in your local authority? ). I feel like maybe the grief is only just hitting me now – perhaps because when the due date has been and gone, then it all becomes real and in turn, gives us some kind of closure. Because that’s the end of the life-cycle, as it were. If that makes any sense at all. This all got me thinking, I have nothing physical to ‘show’ for my loss. So I contacted PALS at Broomfield Hospital, to see if I could access my medical records, notes, multiple scan imagery. See if there is any ounce of explanation following my ERPC (and the subsequent investigation that was to allegedly follow). I kept my eyes firmly closed for a lot of the scans and procedures – willing it to be over. Anything any specialist pointed out or illustrated on the screen was a blur and didn’t register with me. Apparently I should have been offered copies of my scans – I’m now wondering if this also would have helped mark our loss and support our grieving process. Also, you can also ask (or may be offered) a Certification – according to The Miscarriage Association, this is a kind of ‘ death certificate’. For some parents, the sadness of pregnancy loss before 24 weeks is increased by the fact that there is no documentation that acknowledges the loss of their baby. We recommend that NHS trusts create and offer some form of certification for parents who would like this. Tim Loughton MP has recently tabled a Private Member’s Bill which includes a request for a report on whether the law ought to be changed either to allow the registration of pre-24 week pregnancy losses (so it’s a personal choice) or to require it (so it is a legal requirement). The Miscarriage Association ran a survey on this to collate personal views – more details on this can be found, here. The PALS team at Broomfield got in touch with a really lovely email – which was followed up by a call today from the Matron of Gynaecology. She’s invited us into the hospital to go through my notes and any questions / concerns, with my consultant (who was also the consultant we had for when I was pregnant with Eli), Miss Joshi. I was taken aback by the phone call and became quite emotional with the Matron. The kindness of strangers will never cease to amaze me.
To our Baby Briston-Hill (PRAWNER #2), you never did arrive in our arms – but you will be forever in my heart. I will live in wonder of who you would have been – you’ll always be my favourite what if? my little darling.
Thank you for reading thus far; and thank you for the bags of support and love we’ve received. It means the world 🖤 Eli is going to be the BEST big brother (EVER) when it happens. And not a single one of us can wait. As the wonderful mind that was Professor Stephen Hawking, so perfectly put it,
“Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.”
I can’t quite get my head around the fact that I’m STILL going through this Miscarriage. I never would have imagined it would be such a long process, drawn out process. Ok, for some, it is quite a shockingly quick and robust experience – but for others, it is marred with several medical intervention attempts and a hell of a lot of limbo.
As I’m currently going through this heartbreak – many other women, couples, families are also going through it too. Around the world. As I’ve mentioned many times, 1 in 4 of us will go through it at some point. 1 in 4 of you have been there. You know the physical pain, the emotional pain. So, I wanted to write a blog post dedicated to you, as today marks the beginning of Baby Loss Awareness Week 2017; which is held annually, globally, to remember those very tiny lives lost in pregnancy and soon after birth. The week will culminate with a Wave of Light on Sunday (15th October) at 7pm. See further details below.
Firstly, thank you. I’m not sure how else to say it – but thank you for all the kindness. It’s overwhelmed me and I’ll never forget it.
Secondly, I’ve shared so much of my journey; I’m an over-sharer by nature. But mostly, apart from this whole process being cathartic for me, I also wanted to share because thats how we learn. We learn from others’ experiences. What I found, was that Pregnancy & Baby Loss was exceptionally untalked about. It’s seen as taboo and very private – is that a British thing, or is that the situation worldwide? In general, I’m ridiculously British about things – I’m pretty naive, I’m pretty prudish. I get bashful at the mention of S-E-X. But THIS, this, I NEED to talk about. I also need you to talk out too. Let’s get together to break the silence of miscarriage & baby loss during this, Baby Loss Awareness Month.
I’d like to propose that my blog serves as a platform for you to be able to share with me. If your experience has proven too difficult to talk about openly, I am more than happy to publish stories anonymously. Whatever works for you – just PLEASE talk. Though I’m not known for being concise, this doesn’t have to be lengthy – just a few words from the heart to help yourself and others heal. It serves as such comfort and support – whilst also being therapeutic for yourself. Personally? I have found true solace in these online realms. I can’t be the only one?!
Losing a baby at any stage of pregnancy is a devastating experience. It is hard to believe that in this day and age, up to one in four women will lose a baby during pregnancy or birth.
Tommy’s exists to change the unacceptable statistics connected to baby loss.
Thanks to the support of our incredible community, our research has lead to a reduced stillbirth rate of 22% in Greater Manchester between 2010 and 2014 and a 23% reduction in premature births in high risk women attending our London clinic during 2014-15.
Stories of good care
During Babyloss Awareness Week this year, the 40 participating charities and groups are calling for improved care following the loss of a baby during pregnancy, or during or shortly after birth.
As part of this campaign, we are asking people to share their experiences of good care they have received, perhaps from a midwife, sonographer, friend or colleague. If you would like to get involved, please email a story of less than 150 words to firstname.lastname@example.org, copying us in on email@example.com.
Wave of light this Sunday
Last year we made a special video slideshow using hundreds of candles that lit up our Facebook page in memory of babies lost far too soon. If you’d like yours included this year, please add a note ‘For the video’ when you upload a picture.
While Baby Loss Awareness Week can be a special time of remembering and speaking about loss, we understand that it can also evoke painful memories. If you need to talk, please feel free to call our helpline on on 01924 200 799 (Monday – Friday, 9 a.m – 4 p.m) or see our website for other ways we offer support.
After lack of bleeding from my Medical Management, we went into the scan on Monday 2nd October kind-of hopeful. We had the Consultant Obstetrician and Gynaecologist, Dr Anita-Rao, along with our Sonography staff. Dr Anita-Rao had all my (many) previous scans in front of her, I knew by the movements of the scanner and her face that it wasn’t good news…
She put the probe down and moved the screen towards us. The sodding sac was STILL there. But it gets worse… not only was it STILL there, but it had GROWN. The empty sac had increased. I couldn’t believe it. I’d lost so much tissue and blood during my Medical Management, so how could this have happened? It was all kinds of insane. I went into that bubble of your own, where you can hear the sounds of conversation – but can’t make out the words. According to James, the Consultant explained that the hormones given during the Medical Management had encouraged an increase in amniotic fluid – thus enabling the sac to grow/fill with fluid. She showed us a heat map, indicating no blood flow, no heart beat, no life. By this point I would have been 16 weeks pregnant – the sac had increased in size from 7 weeks and 1 day (at the 12 week scan) to measuring 8 weeks. Dr Anita-Rao advised the only way to go forward with this now was Surgery. The dreaded (ERPC or ERPoC, which stands for Evacuation of Retained Products of Conception. You might hear it called it a D & C too) which is under anaesthetic.
Dr Anita-Rao then said “Ok Claire, let’s get you sat next door and make you a bit more comfortable”. To which I jumped off the bed and shouted “WHAAAAAAAT!”. As I was in my little bubble, I didn’t catch what the conversation actually was, and I thought they were going to take me off to theatre, there and then. Obviously, my first thoughts were – “My darling Eli! – he’s at school – I need to see him”.
What they actually meant was, they wanted to go back to the Quiet Room to discuss the procedure/dates/times.
Midwife Amelia came back to us, once again – so wonderfully compassionate and with genuine empathy. We discussed the Surgical Management of Miscarriage and she handed me the instructions for patients ahead of General Anaesthetic. I was booked in for the morning surgery on Wednesday 4th October – therefore, had to be at Broomfield Hospital for 7:30am (being Nil By Mouth from 2:30am).
LOOK AT THIS LIST.
My favourite thing on this list? The SILVER LINING in this whole experience…. take a look at number 5: 5) I will undertake to refrain from the following activities for at least 48 hours after the anaesthetic (please note that depending on the nature of the surgery this period may be longer);
Not to drive a car, motorbike or bicycle
Operate machinery or cook
Engage in any sporting activities
Return to work
Drink alcohol or take drugs, other than those prescribed
Sign any legally binding documents
YAAAAAAS to no driving, cooking (and cleaning) or signing of legal documents. Though, this did implicate James working – thankfully he works for a very understanding company. We don’t have any family down here, so we’re reliant upon eachother in times of need – and our friends help out around us as best as we can all manage.
So that was that. We had all our questions and concerns answered by Midwife Amelia and given well wishes for the future. I also had to not apply any perfumes and wash with this ^ Octenisan – in aid of protecting against MRSA.
Wednesday 4th October A301 – Theatre & Day Surgery – Broomfield Hospital
Upon arrival at 7:30am, we were in a large waiting area of A301. My name, along with around 30 other names, was called and we were escorted by the Pre-Anaesthetic team to ‘Recovery 2’ ward, waiting area. There were separate waiting area’s for Males & Females (adult surgery, only), the signs said this was in line with ‘protecting dignity’.
We were both acknowledged as being there – despite me being the patient. Which I thought was really kind of the staff. We both sat on a green chair each – all freshly cleaned (with green warning stickers to say so). I reclined the chair and waited for my first set of assessments.
We weren’t waiting long before I was ushered off to a side cubical and given details of who I would speak to and having my ob’s taken. After a bit of back and forth between waiting areas (and a lot of apologies and friendly chatter), I was sat down finally in another cubicle and awaited a chat with my Anaesthetist. Dr John finally came along – he had a familiar face – a bit like that of Actor James Redmond. I talked through how petrified I was of ‘being put to sleep’. He talked through the process, reassured me no-end and I felt so much better about the entire situation. I signed some forms and he said he’d see me again, just before theatre.
I then awaited a chat with my surgeon, Dr Mistry. Dr Mistry, again settled my nerves about the actual procedure. We talked about the fact I was left in quite a state after an Episiotomy gone very wrong, following the birth of Eli (which left me with early-caught-Sepsis and a very damaged undercarriage that was left to heal ‘on it’s own’ for neigh on 2 years). (Yep, not had a lot of luck on my side to be honest!)
I was then told that I was at the bottom of the list for the morning surgery. My last meal was at 9pm the night before (having only had a bit of water when I got up at 5:30am). By this time it was 10:30am and I was SO THIRSTY! I drink a lot of water, every day – more out of habit than anything else! But it was driving me crazy not being able to even wet my mouth.
I was given lots of updates and eventually told at 11:45am that I was ‘next’.
12:15 arrived and a lovely lady came with all my notes to take me to theatre. James and I said our “I love you’s” and off I went. I know it was a straight forward procedure, I know it wasn’t complicated, but the fact I was being put under anaesthetic, as a MOTHER, petrified me. You just don’t know how your body will react to things like anaesthesia. What if I didn’t wake up again? That was my big fear. Not the pain or discomfort. The FEAR of being put to sleep.
I thought I’d be taken down to the theatre on a bed, but instead, I had to walk there. It was a short walk. But I balled my eyes out the entire way. The nurse who took me along was brilliant – she wrapped her arms around me tightly and told me that she knew it was scary, but it would be fine. I needed her comfort. We walked into a room marked, Theatre 18. Once inside, she explained that this was the Pre-Anaesthetic room, where I would be put to sleep – once under, I’d then be taken through to the actual theatre. She took off my sliders and undid the back of my hospital gown and helped me up onto the surgical bed.
She stayed with me for a little while – then the Anaesthetic room began filling with medical staff. I looked around at the mass of machines and equipment. I could see the theatre ahead of me, through some double doors. A few members of the surgical team went through the doors – the light above now highlighted ‘IN USE’. I closed my eyes each time someone went through the doors. I didn’t want to ‘go to sleep’ to the view of the theatre. It was insanely bright and white. And frankly, it scared me. Maybe I’ve seen too many hospital programmes!
My lovely nurse then said her goodbye’s and passed me over to Julia. Who prepped me with chest electrodes, a blood pressure band & finger monitor and tucked me up under a blanket. She gave me tissues and stroked my hair. I was trying my hardest to be strong. But my god, it’s so hard when people are just so bloody lovely and all you’re talking about is your wonderful family.
Dr John prepped my arm for the cannula, as we talked about our trips to Cornwall. Everyone chirping in about their own experiences – so laid back! There were around 6-8 staff in this tiny, dim-lit surgical room by this point. My surgeon arrived with another doctor. All smiles.
Dr John administered the cannula (OUCH) to my left arm; and washed my vein out with saline. I remembered that cold feeling running down my arm, from when I had the drip during labour with Eli. The chatter was constant – this time turning to accents and how we’d managed to ‘end up’ in Essex. I could feel another fluid going down my arm and began fighting to keep my eyes open – focussing my attention on that ‘IN USE’ sign above the theatre doors – for I knew when that was out of focus, I’d be gone. I asked “have you given any anaesthetic yet, because I feel a bit weird?”. I then remember thinking, ‘they’re all chatting away to me so they can tell when I’m asleep – so I’m going to keep on chatting, so they can’t trick me’. It must have been Pre-Surgery logic… or something.
The last words I heard were “It’s now going to feel like I’ve just given you a few large Gin & Tonic’s, ok?”. I remember nodding and feeling really cosy… and that was it. Out like a light.
Fast forward to 1:30pm and I was on the first Recovery ward. My waking words were repeatedly “I love the NHS” and “Save the NHS” and “compliments to the staff”. YAAAAAAAS to #SAVETHENHS. The nurse who was looking after me told me to stop being apologetic (!!!) and that I was fine and everything went as it should have. She then asked for my consent to check the pad that I’d woken up with. I was bleeding a normal amount – phew. She then told me it had taken a little while for me to come round. I was surprised, shocked… and then felt so incredibly sick. She grabbed one of those egg-cup dishes and kept checking my blood pressure. It was slightly high. My temp was 37.8. I felt so, so sick and dizzy. But just so relieved to be awake! She said they’d already given me painkillers and anti-sickness medication – then she administered a little more anti-sickness medication for me. I then began feeling a lot better. Soon after, my stat’s began to normalise. In the time that I was settling down, I saw 3 patients transferred to the recovery ward post-surgery. It was so interesting to see. The quality of care was just incredible. The teamwork, the processes and attention to detail was above and beyond.
By 2:30 my nurse was happy to have me transferred back to the Pre-Anaesthetic ward, where James would be called to come and find me – I can’t remember her name, sadly. I wish I could. I was wheeled back to the ward in my post-surgery bed, feeling ridiculously happy? Not sure if this was a side-effect of the anaesthetic or if it was pure relief and the joy of feeling proud of oneself.
I played an ill-timed joke on James before he arrived on the ward – of which, he’s still pretty annoyed with me about – so I won’t go into it. Hah. But here I am, about 90 mins post-surgery. I had to be linked up to oxygen for a little while after as my level’s hadn’t settled.
But man-oh-man, that first water since 5am was SO GOOD. I drank a litre in a matter of minutes. It must have been about 3/3:30 by this time and I was told I could eat! SO EXCITED. I had a cup of tea and toast on their way. I don’t think ANYTHING will ever beat that tea & toast you have after childbirth – but this one, was pretty damn close!
James spread the butter and marmite while I supped on that lovely, perfect, cuppa! Oh it was so good. I had little pain/cramping. Nothing major – and like I say, I felt pretty bright in myself. I just couldn’t wait to get home to my boy.
I had a few after-care instructions to go over with the Senior Staff Nurse on the ward and would then be discharged. I signed a form to allow the Pregnancy Products to be disposed of, after investigation. I was given all the warning signs and symptom’s to look out for post-surgery – and told to expect bleeding for around 7-10 days.
Now then – I got home expecting to be filling pad’s and pad’s with blood. But again – I’ve had nothing. No idea if this is good or bad – but Dr Google tells me that this can be pretty normal. Infact, bleeding can sometimes begin a few days post-surgery, resulting in heavy bleeding with clots and a lot of pain. So with this in mind, I’ve sadly had to cancel my @LuckyThingsBlog night out tomorrow evening in aid of stayed rested. I just can’t run any additional risk of infection at this point.
So here we are today, Friday 6th – 2 days post operation. I feel ok in myself, still. I woke several times in the night with bad cramps – but after a few painkillers and a bit of To Kill A Mockingbird, I could cope and go back off to sleep. I feel generally achy (hips & back, must be from the procedure positioning) and my pretty bruised – I also have a massive ulcer in my mouth, from where the breathing tube went down my throat.
I have moments of sadness and waves of positivity. I’m mostly sleeping. Not really got a major appetite – though, as usual, I can drink my weight in water. So that’s fine. I’m not allowed to have a bath / stay in the shower for too long (again, risking infection due to open cervix) and I’ve got to keep those dashing surgical stockings pulled up to my knee’s (which is also fine, considering the cold snap – I have pleasantly toasty legs!).
I’ve been sent the most amazing Get Well flowers, plants, cards & chocolate. But mostly? I’m overwhelmed by the kindness I’ve seen in messages and comments – from friends and strangers alike. I appreciate every single one.
This has, so far, been my Miscarriage journey. Whilst I wouldn’t wish this experience on even my worst enemy, I do hope that in sharing my experiences, I have helped someone else. Just one person. This has been a truly cathartic process – and necessary for me. For me to heal and come to terms with things. It’s not for everyone – but if you feel the need to share, then please, please do. Miscarriage is such a common heartbreak that can happen to anyone. 1 in 4 of us – maybe even 1 in 3 of us. But we’re not just statistics – remember that. Sharing your story can make such a difference – not just to others who are going through the same horrendous journey, but also to those charities such as Tommy’s and The Miscarriage Association – that, as I’ve said before, support crucial research into Pregnancy Loss – something that would not be possible without YOUR stories too.
Thank you from the bottom of my heart for all your kindness, guidance, advice, laughs and positivity. I’m not entirely sure what kind of awful position I would be in if I didn’t have the support of my friends and family both offline AND online. It’s meant the world to me – to us, as a family.
As before – it’s good to talk about things. So please do keep getting in touch and sharing your experiences. It’s the only way we’ll learn.
I thought another ‘update’ was due from me & my miscarriage journey as quite a few things have happened since my last post >> Miscarriage & Me // An Update, (posted on 14th September). I’m sharing my experience because:-
1) It’s been cathartic for me to write everything down and actually go over what’s happened, as some days are a bit of a blur – especially with all that hospital jargon.
2) The only way to learn is from others’ sharing their own experiences – I had absolutely no idea how common Miscarriage was/is. It’s only through sharing that I now know so much more and understand so much more. It’s also been of great support for me (and I’m told by others – which has overwhelmed me like you’d never know). By allowing people in and allowing them to also share in their journey has kept me going.
3) Charities such as Tommy’s rely on people sharing their own story, to aid their crucial research into Pregnancy Loss.
This could be lengthy as I get up to date – but as I say, typing it out helps me to move along and have a bit of a ‘brain dump’, as it were.
19th September Re-scan // Broomfield Early Pregnancy Unit
The re-scan was done in EPU this time. Despite bleeding lightly, pretty constantly, since 27th August, I was quite shocked to hear that my scan was looking no different to the scan I’d had two weeks previous (the 12 week scan).
As the empty sac still measured at just 7 weeks, and by dates, I was now 14 weeks, the midwives advised that we need to now take some further action as it looks like my body (ridiculously cruelly) still thinks it’s pregnant and that sac ain’t shiftin’.
We were then lead to that dreaded ‘Quiet Room’ once again; where Midwife, Amelia, came to discuss my options once again. There was absolutely no pressure, but she did remind me that as things weren’t ticking over naturally and had been stationary for longer than expected – therefore leaving me open to potential infection. Ugh.
We talked things through – I was then booked in for ‘Medical Management’ Part One for Friday 22nd September; followed by Part Two on Sunday 24th September.
(Here is some explanation on Medical Management of Miscarriage – including some of that lovely hospital jargon, simplified. Scroll on to continue with my ‘story’).
What is Medical Management of Miscarriage?
“You may choose to have medication to remove the tissue if you don’t want to wait. This involves taking tablets that cause the cervix to open, allowing the tissue to pass out.
In most cases, you’ll be offered tablets called pessaries that are inserted directly into your vagina, where they dissolve. However, tablets that you swallow may be available if you prefer. A medication called Mifepristone is sometimes used first, followed 48 hours later by a medication called Misoprostol.
The effects of Misoprostol tablets usually begin within a few hours. You’ll experience symptoms similar to a heavy period, such as cramping and heavy vaginal bleeding. You may also experience vaginal bleeding for up to three weeks.
In most units, you’ll be sent home for the miscarriage to complete. This is safe, but ring your hospital if the bleeding becomes very heavy.
You should be advised to take a home pregnancy test three weeks after taking this medication. If the pregnancy test shows you’re still pregnant, you may need to have further tests to make sure you don’t have a molar pregnancy or an ectopic pregnancy.
You may be advised to contact your healthcare professional to discuss your options if bleeding hasn’t started within 24 hours of taking the medication.”
Medical management involves a single visit to the hospital. During this time, you will have pessaries (tablets) inserted inside your vagina, or you may be given the tablets orally if you are having vaginal bleeding. These work by making your womb contract and push out the pregnancy tissue. You may need more than one treatment with pessaries or oral tablets before the miscarriage happens. You may choose to stay in the hospital or go home following the administration of medication. If you prefer you may take the tablets home and take them yourself at home. Bleeding may continue for up to 3 weeks after treatment.
Does it hurt?
Once the miscarriage starts, most women have quite strong period-like pain and cramps and some find the process very painful, especially as the pregnancy tissue is expelled. This is because the womb is contracting and pushing (imagine tightly clenching and then relaxing your fist a few times) rather like the contractions of labour. You are also likely to have heavy bleeding and pass blood clots. You may see the pregnancy sac and it may be larger than you expect. You might see an intact fetus, which may look like a tiny baby, especially if you are miscarrying after 10 weeks. You may take Paracetamol or Co-codamol for pain relief, but you should not take Aspirin or Ibuprofen as they may make the treatment less effective.
Some women react to the medication with nausea and/or diarrhoea.
Are there any risks?
The risk of infection after medical management is low, at around 1 in 100. Signs of infection are a raised temperature and flu-like symptoms, a vaginal discharge that looks or smells offensive and/or abdominal pain that gets worse rather than better. Treatment is with antibiotics. In some cases you may be advised to have an ERPC. You will probably also be advised to use pads rather than tampons for the bleeding and not to have sexual intercourse until the bleeding has stopped.
There is a small risk of haemorrhage; a recent study reported that 1 in 100 women had bleeding severe enough to need a blood transfusion. If you have very heavy bleeding or severe pain and/or feel unwell, or if you just find it hard to manage, you may ring your Early Pregnancy Unit for advice, 111 or 999 if necessary.
Medical management is effective in approximately 80 to 90% of cases. Where it is not, women may be advised to have surgical management – an ERPC.
What are the benefits of medical management?
The main benefit is in avoiding an operation and general anaesthetic. Some women prefer to be fully aware of the process of miscarriage and may want to see the pregnancy tissue and perhaps the foetus. Some women feel this helps them say goodbye.
Some women see medical management as a more natural process rather than having an operation, but more manageable than waiting for nature to take its course. It may be helpful to know that if the treatment doesn’t work, you may be able to opt for ERPC.
Some women find the process painful and frightening, though good information about what to expect can help. Some women are anxious as to how they might cope with the pain and bleeding, especially if they are not in hospital at the time. Some fear seeing the fetus. Bleeding can continue for up to three weeks after the treatment and women may have to have several follow-up scans to monitor progress. This can be upsetting. Some women will end up having an ERPC as well as medical treatment.
I was given the usual consent forms ahead of being handed the Mifepristone along with anti-sickness tablets. I then had an hour to rest and had the typical stat’s taken before/after. All was fine and I was sent home. I had no pain, no nausea and more importantly, no bleeding in the 48 hours ahead of Part Two.
Although I was willing for SOMETHING to happen, nothing did. We went for lunch with my parents (who had visited for the weekend); and we even had a child-free trip to the CINEMA! (FINALLY saw Dunkirk, which is just the most incredible slice of cinema I’ve seen, ever, I think). The distractions didn’t offer up anything.
So we went back to the hospital bright and early on Sunday morning. I was mega nervous. I had a nervous tummy, sweaty palms and little-to-no conversation in me.
Sunday 24th September Gosfield Ward – Early Pregnancy Unit – Broomfield Hospital
The ward was pretty silent when we arrived at just before 10am. Eerily so. No sooner had we arrived before I was changing into a hospital gown and laid on the bed in my private room. I was given more information about the procedure and had my stats taken. After the birth of Eli, I was admitted to hospital for a week to treat near-death early-caught-Sepsis. The experience left me with ‘White Coat Syndrome‘ – of which I have to explain to EVERY caregiver who has the joy of taking my blood pressure – “White coathypertension, more commonly known as white coat syndrome, is a phenomenon in which patients exhibit a blood pressure level above the normal range, in a clinical setting, though they don’t exhibit it in other settings. It is believed that the phenomenon is due to anxiety that those afflicted experience during a clinic visit”. I have to say, I do feel for these poor individuals – I’m not the easiest patient to deal with!
By 11am I had ordered my lunch (from a pretty extensive and surprisingly appetising hospital menu!) and was awaiting the doctor to come with my medication to kick-start the ‘induction’, so to speak. I weirdly felt quite relaxed… I think it felt like there was finally light at the end of the tunnel. Maybe I was riding on nerves and adrenaline/anticipation.
The pessaries were inserted (all 4). Yes it was uncomfortable – and slightly painful – but it takes just a few minutes. So its completely bearable. I would then have to lay flat for an hour – hour & half. Within 10 minutes the bleeding started. It suddenly became very, very heavy. We called for a Nurse (Lucy), who got me up out of bed and took me into my private en-suite.
I was then given the ‘pan’ of which I would need to collect all tissue – which would then be taken for assessment. I’m sure all will agree that dignity is something very foreign when enduring anything child-baring related. This wonderful Midwife sorted me out at my most vulnerable – in the most caring and gentle way. She made no fuss and made me feel at ease; whilst giving me a ‘wet wipe’ bath to remove the blood stains from my legs and back. Sorry if this is a totally grim read – but I want to be honest. There’s no shame in any of this – and sadly, it’s just the way it is. This is the process. I won’t go into the whole NHS funding/Nurses wages thing – but my god, these wonderful, wonderful humans – they deserve the world. The things they must see, on a daily basis. I can’t even comprehend. What incredibly skilled and insanely caring people. Unbelievable. #SAVETHENHS
I spent my time back and forth from the bed to the en-suite for the next hour, when we managed to get the bleeding under some control and I could rest on the bed with maternity pads/bed pads. My lunch arrived – and I was ravenous. James went to the Hospital M&S to grab himself some lunch and for a bit of a breather too, I imagine. It’s all pretty gruesome and definitely something he’s coped with exceptionally well considering he was once very squeamish (he may well be squeamish still, not sure how you can’t be looking at what we went through this weekend – but he did a bloody marvellous job of comforting and supporting me throughout). The Chilli I ate for my lunch was beautiful – really hit the spot and cheered my mood right up – as did the Harry Styles album I had streaming.
The afternoon was again spent back and forth from the bed to the en-suite (I couldn’t just stay in the en-suite, I wanted to be on the bed and cosy) with Nurses coming and going – checking my progress – checking the tissues I’d expelled and the bleeding – but not overstaying, which gave us some well needed privacy that I really valued.
By 3pm I was in need of painkillers. The cramps were getting really painful – not unbearable, but I didn’t want them to get to a point where I was in need of severe pain management. So the Midwife (Pankaja) nipped the pain in the bud with 2 paracetamol and liquid morphine.
Not long after, I was given the menu for tea – even though I’d anticipated I’d be home by now. So I reluctantly I ordered Chicken Tikka & Rice and a Rice Pudding. Yep three meals with RICE, in one day – YOLO. I’ve got to praise this hospital food – seriously! It was super tasty, a great portion size, hot and not in the slightest bit sloppy, soggy or plasticky – which is what I’d encountered previously. My body definitely appreciated the good food too.
By 5pm, I was given a pretty painful internal. Which even the painkillers couldn’t fend off. A huge light was brought in on wheels along with the paraphernalia you’d normally see when having a Smear Test…and/or having your waters broken. The doctors agreed that the bleeding would continue and were satisfied with my progress thus far – my Cervix was open – so that was a good position to be in. Though, they were not convinced that the sac had passed and began discussing the repeat procedure of the pessaries – which would mean an overnight stay. While the staff debated my situation, Eli arrived with my parents. They were going home that evening. Thankfully the bleeding was nigh on stopping and the pain had eased. So he just saw his Mama in her “really pretty” hospital gown – and my god, I was so happy to see him and we had the BEST cuddles. His affection made me forget about it all – made me zone out – for just a few moments. (He also said I looked pretty in my hospital ‘dress’. There’s a first!)
By 7pm, the Registrar had decided against an overnight stay and repeat procedure – I’d had too much medication for one day. Therefore, I’d be discharged with a letter, antibiotics and a repeat scan for 2nd October. So I have until the 2nd to finish expelling whatever is left.
I was discharged at around 8:30. I was shattered and it was a surreal journey home – it felt like 4am or something. I then slept. Slept and slept and slept. Never have I ever slept so much. I even SLEPT THROUGH on Sunday night, something I’ve not managed since well before Eli arrived. So that was weird too.
Since then – and up until today, Wednesday 27th – I’ve had little/no bleeding once again. Though I’ve had the odd cramp, back pain and baaaaaaad head. So once again, I’m in limbo. Has it all expelled? Is it over? Is it stuck?! Has the sac come away? Has my cervix closed up again?! Am I anaemic with all this blood loss? Is that why I’m so damn tired? Guess I’ll just have to wait it out until 2nd October when I get scanned again. (I’m also eating allll the kale, cavolo nero and spinach I can muster to get my iron on the up, incase!). If there are still some bits of tissue remaining/the sac still clinging on, then it will be off to surgery for me – for the dreaded Surgical Management (ERPC or ERPoC, which stands for Evacuation of Retained Products of Conception. You might hear it called it a D & C too) which is under anaesthetic.
One thing I would say is though – Men/Partners do tend to get ‘ignored’ slightly during processes like this. I know I’m going through it harder – physically – but mentally, we’ve both lost out. We both desperately wanted that baby and we’ve both had the pregnancy loss. Both had the miscarriage.
Throughout the 30+ hours of labour with Eli, James was offered a cup of tea just ONCE. I was offered dozens of cups, despite being nil by mouth. The same happened again during this process – I was offered loads of tea/coffee. James wasn’t ever offered either – it was Sunday and the coffee shops closed early. So I really felt for him – he was going through it too – and yes, tea generally does solve a lot of things! If nothing else, it warms you up from the inside and gives you something to zone off with, even for just a few minutes. So perhaps it could be worth taking a flask of tea in – or whatever beverages/snacks you both need – should you be reading this ahead of venturing through this procedure too.
So there we are, thats where I’m up to now.
As before – it’s good to talk about things. So please do keep getting in touch and sharing your experiences. It’s the only way we’ll learn.
I have been waiting to write this blog post for SO SO LONG.
Mr Eli was diagnosed with Bilateral Talipes when he was 25 weeks old, in utero. We were told it would be mild when he was born. Granted, it didn’t look anywhere near as bad as we were expecting when he was born – and there was a lot of flexibility in his feet, which was good news.
8 weeks into doing stretching exercises at home, we hit a brick wall (I was also told at Eli’s 8 week check by the top GP in the practice that his feet would “correct themselves”). I finally got a physio appointment for Eli when he was 10 weeks old. Roll onto 13 weeks and we were seeing our Consultant, who said Eli would be following the Ponseti Method of treatment for Talipes – plaster casts followed by wearing Ponseti Boots & Bar. Eli had plaster casts for 6 weeks, up to the top of his thighs. It was quite frankly, horrendous. He was old enough to understand a bedtime routine with his lovely soothing bath. He was old enough to want to roll over. We were without these things for 6 weeks and of course, without any sleep too! In December 2012 Eli began wearing his Ponseti Boots & Bar, 23 hours a day. For the one hour he had the boots off, he had a ‘run around’ and his lovely bath. He wore the boots & bar full time for 6 months, going down to just wearing them at nighttime (12 hours) after our 6 month appointment. At 10 months old Eli started cruising the furniture (and anything else he could get his hands on!). Since then, Eli has had several good reviews with his Consultant. The last appointment we had in November 2013 was amazing – his feet look just like a ‘normal’ child’s’ feet. Our Consultant was so happy, he almost packed the boots & bar in for good – but we have to be sensible, there’s always a chance of relapse and we didn’t want Eli to stop wearing the boots & bar too soon; after all, most Talipes children wear the boots & bar until they reach 5 years old.
At 16 months, Eli took his first few steps between Mr Memoirs and me – aided by the bribe of a dummy (which he only has for bed).
At 17 months old he’s walking, completely unaided and with a degree of good balance (he’s currently having a bout of Torticollis at the minute, so he’s sloping off to the one side). When his Torticollis sorts itself out in the next few days we’re very confident that Eli will be dashing everywhere. Of course, the Torticollis does coincide with the fact he has reached yet another milestone. (He also has Chickenpox, to boot! That’s another blog post in itself).
We’ve had this lots before, but I know most people would be saying:
“Keep him crawling as long as you can, you don’t want him running about yet – you’ll be shattered!”
“Hope you’re ready for all that running about!”
“Oh god, now the fun really starts.” (AS IF it’s a negative thing?!).
“You’ll regret saying you want a walker!”
But my goodness me, we’ve wanted nothing more than to be worn out after running around with our little boy. I don’t think people realise sometimes – and I understand that people do speak without thinking too. This still feels very surreal to us. An absolutely amazing achievement for our darling boy – we’re so proud we could BURST.
Without the treatment that Eli has gone through, he would not be walking – full stop. All the tears, endless sleepless nights, stress and strain was all completely worth it.
There is literally nothing more wonderful in life than seeing your child grow and develop. And our brave little soldier is growing and developing just perfectly.
I have been looking, with interest, at some of the posts that have been published during the This Is My Child awareness campaign via Mumsnet. We live our life day-to-day as normal. Because THIS is our ‘normal’. Eli is our first born and we know no different. But I suppose, our story is different. I’ve not really highlighted Eli’s Talipes or (recently diagnosed) Benign Paroxysmal Torticollis on my blog before. I have mentioned in a few posts about his Talipes. But nothing in depth. So here it goes!
Everything stems back to when I was pregnant. I had a very tough first few weeks, after a bleed we were told that the pregnancy might not be viable at a 5 week early-pregnancy scan and told to return in 3 weeks time; where we saw the most amazing and incredibly tiny flickering – a heartbeat! PHEW!
We so looked forward to that 12 week scan. The sonographer was lovely, but seemed concerned. Eli was jumping ALL OVER, I thought she was just having difficulty measuring up dates because he wouldn’t keep still. She then turned the machines off and said she was sorry to tell us that our bundle of joy had a “nuchal fold measurement on the cusp of high”. The exact measurement was 3.5 mm. This was indeed the cusp before they offer you further investigation. We needed to know. We were informed that a high NT measurement could mean a multitude of conditions, including Down Syndrome. This was heartbreaking. This baby was so wanted – we needed to know what we were facing. We had ‘counselling’ and I had bloods taken. The nurse then called University College Hospital London and told us they had a referral for the the very next day. We were told we could have a more in-depth scan at the Fetal Medicine Unit; where we would also be offered the option of CVS – which would indeed confirm any anomalies, through a horrendously invasive procedure. After the lengthy scan with several specialists, we were advised that we could either go ahead with CVS there and then, or wait… It had been picked up that there was a lack of nasal bone; another marker for Down Syndrome. Our world shattered. HOW WOULD WE COPE?! We went ahead with the CVS there and then. It was like a whirlwind.
The procedure was horrible. Just horrible. I had soreness and tenderness for a few days after. Not to mention the constant worry and stress of the risk of miscarriage. It was a very very hard time for both of us, waiting for the results. 3 weeks passed and we received a letter confirming that everything was spot on with Eli. He didn’t have any of the common anomalies that CVS tests for. We were over the moon to say the very least. PHEW!
But this was not the end of our hospital visits. To cut the (very!) long story short – we had a total of 9 scans. Because of the NT measurement, Eli’s heart, organs and growth was routinely monitored. He developed fantastically. At the 25 week scan, it was found our baby had a degree of Bilateral Talipes. But it was “extremely mild”. PHEW! It was corrective. We were happy. In the grand scheme of things.
Fast forward to almost 42 weeks pregnant, I was just a HUGE pregnant ball; unable to move, pretty much. That little boy was so so squashed up inside my petite 5 ft nothing 1″ frame. I was eventually induced. Which, shock horror was just the WORST thing ever. (Incidentally, I would never recommend an induction. Just bloody wait till the baby wants to arrive!). After 30 hours of labour, Eli was pulled out of me in an emergency situation using Ventouse. He was out, safe, at long last. PHEW.
Or so we thought.
We both immediately looked at his feets. Yes, they turned in, but probably weren’t half as badly affected as we were imagining.
Again, fast forward to 8 weeks old. We’d not been seen by a specialist. Not even had a referral. At Eli’s 8 week check the GP who was head of the surgery, told me that his feet would ‘correct themselves when he learns to walk’. I wasn’t happy with that. We’d been massaging, manipulating and exercising Eli’s feets since birth, but at about 8-10 weeks had hit that brick wall. They weren’t getting any better. With the encouragement from @BexandMic on Twitter, who’s beautiful son Hugo was also born with Talipes, I kicked off at the Health Visitor. I got a referral to see a Physio about his feet. At the very first appointment our lovely Physio, Jenny, pointed out that Eli’s head was tilted to the left. I couldn’t understand what she was referring to, he just couldn’t hold his head up yet… She explained it looked like he had something called Torticollis. Possibly from being so squashed up during pregnancy, possibly from the trauma of being pulled out so quickly. I was given exercises to do with his neck regularly, after a week, his head was straight! I still to this day can’t believe we didn’t notice it. Looking back at photos, his neck is completely to his shoulder on every single one. There was still tightness after a few sessions with the Physio and more manipulation on our part. We eventually saw our consultant, Mr Tuite at Broomfield Hospital on 31st October. Eli was almost 14 weeks old. Worryingly, most children with Talipes begin their treatment shortly after birth.
We were devastated when Mr Tuite said that Eli would in fact require plaster casts to begin the correction process. Mr Eli was pretty mobile at 14 weeks old! He was used to his bedtime routine and his bath. We knew the casts were for the best though. We had to do it. We were told Eli had really mild Talipes, again, so would require 2 weeks worth of casts…
6 weeks later Eli was still in casts. It was incredibly tough.
Being the age Eli was, we got a lot of stares. You could just tell people must have thought he’d been dropped and had broken legs. When people asked what had happened, they didn’t understand. They made me feel like the story I was telling was a pack of lies. It was just a horrendous feeling. We did however have luck on our side, in the fact that it was Winter when Eli was in casts. It wasn’t hot, he would have been so much more uncomfortable if it was! He spent a lot of time in long socks and snow suits! In hindsight, I wish I’d been more confident with his casts. Embraced them more. Decorated them, even. The casts did not hinder Eli in any way, he was rolling over in them and they were SO heavy and awkward. He kicked his legs up and down and bashed the casts to bits! He was so brave – he didn’t sleep at night, but hey, he doesn’t now either!
The Torticollis would occur when Eli seemed to meet new milestones. It wasn’t constant. It was irregular. His neck tilted for around a week when he started rolling, sitting up and crawling. But also seemed to coincide with teething too. We continued to repeat the exercises and manipulations.
Mid-December 2012 and Eli went into Ponseti Boots and Bars 23 hours a day. He got an hour “free” where we gave him his bath and he had a kick about afterwards. This was a huge relief. We could get back to normality somewhat. We hadn’t even thought about the visual impact the Boots and Bar contraption would have on other people. After our journey, we had just accepted what we had to go through.
In the coming weeks, I had an array of comments and conversations about his B & B’s.
“They’re funky boots” “Thanks! They’re to straighten his feet” “ohh… I thought they were just fashion accessories! I’m so sorry. Didn’t realise your son was ill”. “He’s not ill?”
“Does he have broken legs?”
“Does he have broken hips?”
“Is that a contraption to stop him wriggling away from you?”
“Do they make him taller?” “WHAT?!”
Etc. Etc. Etc.
We had a lot of nasty glances. A lot of nasty sniggers. I’m REALLY not thick-skinned at all. Like I say, I’d completely accepted that this was his treatment. It did not bother me. This was normal to us now – this was part of our every day lives! Until someone pointed his feet out, or made that eye contact, that’s when I’d think. Then it would upset me. But, I needed to get through that for him. It was in his very best interests. He wouldn’t be able to walk without it! Had we just been too blasé about the entire thing?!
Eli wore his B & B’s for 23 hours a day, for 6 months. Most children wear them for 23 hours a day for just 3 months, then hours are dropped throughout the day until they eventually just wear them at night time. To our surprise, Eli went straight down to just nights at our next review. This was just insanely cool. It was just magical seeing him so free. His feet look PERFECT! We’re so so pleased. We’re also convinced though, that Eli struggles at night time because of his boots and bar. He’s free all day long, then come bedtime he’s confined. He can’t move with ease. It’s uncomfortable and heavy. He will sleep for 2-4 hours at a time. Then I will need to settle him. There has been nights where I have taken his bar or both his boots and bar off, and he’s slept soundly. I’m sacrificing my sleep so he can walk. Easy decision. I do worry it’s not good for him, the broken sleep. But what can I do?!
At 10 months, he started pulling himself up and cruising around his play pen. I can’t tell you how proud we both were. It was just so special; still is! SUPER PROUD PARENTS!
Not long after Eli started standing up, there was an afternoon where Eli was particularly miserable. Anyone who knows Eli knows he is a jolly boy. Barely cries. He’s only ever grumpy in the night! He was super grizzly. I put it down to teething. Then he projectile vomited. His neck was tilted. He went floppy in my arms, the colour drained from usual his rosy cheeks, his eyes rolled back and he seemed to pass out. I was beside myself. Naturally. I rang my OH who calmed me down. I’ve never been so frightened, it was seriously scary. This had happened previously, but I wasn’t there. Another bout of sickness and drowsiness and I let Eli sleep. We then recalled another time when he projectile vomited (he was never a sicky baby so could recall these occasions clearly). Within in a few hours, his neck was back to its mid-line straight position. Without any manipulation. We worked out that they all coincided with his neck tilting. Could the Torticollis be causing this?
I took Eli to the doctors – who were, USELESS. He googled Torticollis and told me what Wikipedia says… He said he’d seen just one other case of this and to go back to the Physio if I was concerned. Hell yeah I was concerned. We didn’t know if it was underlining with something else. I went to Portugal for 4 days. Eli had another bout of the sickness and drowsiness with the Torticollis. Again, his neck had straightened up itself by the next morning. It was all definitely linked.
I went to the Physio again after my trip. She was lovely, she explained that the condition was Benign Paroxysmal Torticollis. This variation of Torticollis comes in waves, or ‘attacks’. The attacks can last anywhere from minutes, to hours, to days and is accompanied by vomiting, pallor, ataxia, agitation, infantile migraine, unsteadiness of gait upon learning to walk, general malaise and nystagmus. All sounded about right. The periods in which the child’s head is tilted and other symptoms appear can last anywhere from a few minutes to a few days, with a frequency of anywhere from two per year to two per month. Looking back at the frequency of the attacks, we’ve found they seem to happen at the beginning of the month – every month, so far. It seems to surround teething, more than milestones now.
So now we know.
But what to do about it. Well, we’ve been told my several doctors and the physio (as well as Google) that Benign Paroxysmal Torticollis is something that Eli will grow out of, probably by school age.
His most recent attack was on 6th August, his 1st birthday. His neck didn’t straighten up quickly this time though, it’s taken a good 10 days this time.
The additional care that Eli requires surrounds his Talipes and his Benign Paroxysmal Torticollis. We don’t know when he’ll be out of his boots and bar, could be at his next appointment (28th August), could be when he’s 3 or 4 or 5. We also worry about relapse; there’s also cases where the feet have been over-corrected so they point outwards. We also do not know when he will have another attack of Benign Paroxysmal Torticollis, or the severity. I have to carry dozens of muslins with me, just incase he projectile vomits. I often worry it’s just going to come out of nowhere. I also worry about when he goes to nursery – are there people who are going to be able to look after him if he has an attack? Luckily, at the minute, I can work from home. But he will need to go into nursery sooner rather than later, for him to be able to socialise with children his age, more than anything else.
We currently do not receive any help, support or funding. I do know of people who have been granted Disability Living Allowance for their children with Talipes.
I’d absolutely LOVE to hear from others who have experiences with Talipes or Benign Paroxysmal Torticollis. The latter being quite rare, so not heard or seen anyone else who has had a child with BPT.
Would we have had it any other way? Ideally, I’d love to have Eli without all the discomfort and challenges he’s faced – of course I would. But my goodness me, he’s a brave boy. He’s SUCH a character. And frankly, it’s made me and my OH better people. We’re stronger. We understand.
Worry, worry worry – isn’t that what all parents do?
When the lovely ladies from Wriggly Rascals approached me about doing this guest post I knew that it was something I could definitely discuss at length… I’d had ligament pain since the very early weeks of my pregnancy…
To read my full blog post, head over to www.wrigglyrascals.com and straight to Ligament Pain During Pregnancy ! Please do tell us all about your experiences with Ligament Pain during Pregnancy. What helped you out the most? How was your birth and recovery? Did you encounter the pain in subsequent pregnancies?
And don’t forget to sign up to the website to join the conversation!
@wrigglyrascals is a new community to help #newmums, join in. www.wrigglyrascals.com About Wriggly Rascals Wriggly Rascals was set up by Shona Motherwell, a frustrated mum of twinsMhairi and Archie to get mums together to share pregnancy, baby and toddleradvice via quick surveys to get the facts about what other mums do. Ourmums pass on loads of great tips to mums who have asked for help. If youwould like some advice, get in touch atwww.wrigglyrascals.com
I received a letter last week from my doctors; offering a Free Flu vaccination. I was quite surprised I had been called for so early – but decided that receiving the jab was essential. This Winter’s Flu jab protects against the same three strains of Flu as last year’s vaccines. These include the H1N1 strain of the Flu virus. H1N1 is the same strain of Flu that caused the 2009 Swine Flu pandemic.
I had the injection on the morning of Saturday 10th December. By the afternoon my left arm was absolutely aching like hell! Then when I woke up on Sunday morning I just felt exhausted; with a really achy arm! By Sunday lunchtime, I was really flagging. I struggled to keep my eyes open – and could not make our usual Sunday roast! DP took care of the roast dinner, but I really had to force myself to eat it – for the sake of the baby growing inside me. I seriously had zero appetite. After lunch I slept all afternoon. I woke up at 10pm feeling even worse. I ached from head to toe. I felt weak and frail. I also noticed a huge red circle on my arm, where the injection had been performed.
I woke up on Monday morning at 6:45am, ready for work. Except I couldn’t lift my head off the pillow. I felt so so ill. My entire back was aching so much – especially the back of my lungs. I couldn’t even clench my fists. I had to call in sick. Only the second time in 3 years – so I think my boss understood ;o
I went back to work on Tuesday – still not feeling great. Infact, today is Wednesday and I still don’t feel 100%!
But hey ho – the side-effects from having the injection clearly out-weigh the effects of actually catching Flu in pregnancy!
For details on why you should get the Flu vaccination, see the dedicated NHS page, here: NHS.uk
This week I went to my GP for a number of things, one of the main reasons was to discuss pre-conception and to make my GP aware that I was embarking on the journey to conception.
My GP wasn’t great and made me feel like I was massively wasting her time… I asked if I should be referred for pre-conception immunisations. She replied with a stark “You’re in your late 20’s, you won’t need any”. THANKS.
I then asked if there was anything else I should be doing or taking. She just shrugged! Couldn’t believe it! I said I was already taking Folic Acid and Vitamin D, as per advice from my previous GP. She then said I shouldn’t be taking Vitamin D just yet… Is this true? It’s not like we’ve had much in the way of sunshine recently.
What was your experience pre-conception like? Did you take anything additional to Vitamin D or Folic Acid? Keen to hear your insights.