BABY LOSS AWARENESS WEEK 2018 // BREAK THE SILENCE

BREAK THE SILENCE

Baby loss awareness week

9th – 15th October 2018

 

I write this post as tears begin to flood my eyes. Warm, salty tears rolling down my cheeks, streaking the make-up mask I wear daily to keep me feeling/looking/seeming normal. To plaster a happy face over my sad one. This very time last year I was recovering from the ERPC operation that physically ended my miscarriage.

A whole year on, mentally, it’s still very raw, it’s still very fresh, it still very much hurts. A whole year on, I’m still longing for – unashamedly needing to have my arms full with a newborn son or daughter, a brother or sister for Eli. My heart aches. When you lose a child, at any stage, you are left haunted by wonder. Wonder who they might have been. That’s what makes it so hard to move on…

It’s been such a long time since we started trying for our second child – our journey began back in March 2017. And here I am, sat at my laptop around 580 days (thats 19 months, in new money, not that I’m keeping check) later – still wishing, still hoping, still feeling huge pangs of guilt because I’m covertly jealous of women that I spot with a beautiful bump; or those with a new babe in arms. It’s easily taking up the majority of my thinking throughout my day – not to mention rudely interrupting my sleep too. Tell me I’m not the only one who dreams mosts nights about parenting a brand new bebé?!

Never would I have imagined it would be such a long, drawn out process. I’m not just talking about the physical aspect of miscarriage – because that definitely sucks and takes ages to recover from too – but the mental heartbreak.

As I’m sat typing this, 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 too know the physical pain, the emotional pain.

Miscarriage and baby loss does not discriminate, it can happen to anyone. It is not rare. So, I wanted to write a blog post dedicated to you, as today marks the beginning of Baby Loss Awareness Week 2018; which is held annually, globally, to remember those very tiny lives lost in pregnancy and soon after birth. The week will culminate with the annual Wave of Light on Monday 15th October at 7pm. See further details below.

I’m not sure how else to say it – but thank you for all the kindness shown to us over the past year. For listening and sharing.  365 days on, I’m still overwhelmed by the messages and and I’ll never forget it.

I’m an over-sharer by nature, sometimes to my own detriment, but mostly,  apart from this whole blogging 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 un-talked about. It’s 2018 and this is still seen as taboo and very private – is that a British thing? Or is this the opinion people have worldwide? It’s crazy, don’t you think? Not to talk and share openly? To grieve and take time to do so.

In general, I am 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. SO! 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… and importantly, with others too. 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 certainly not known for being concise,  yours does not have to be lengthy – just a few words from the heart to help yourself and others heal. It will definitely be a comfort and support for those reading – whilst also being therapeutic for yourself. Personally? I have found true solace in these online realms. I can’t be the only one?!

You can contact me via the comments below, FB & IG private direct messages or via email: claire[at]clairebriston.com

C
✖️✖️✖️

BABY LOSS AWARENESS WEEK // EVENTS

Charities such as the below also have ways to get involved this week, in support for Baby Loss Awareness Week. Events that (are known) you can join are listed on the Baby Loss Awareness site, here.

Online events

  • 9 October 8 pm Join a webinar in the comfort of your own home: Baby Loss, Miscarriage and Stillbirth. With Dr Raj Rai – Recurrent Miscarriage Clinic, St Mary’s HospitalSign up here
  • 15 October 7 – 7:30 pm Online Wave of Light Group Meditation Further information here

Parliamentary activity & events (invitation only)

England

  • 8-12 October: Display in Upper Waiting Hall in House of Commons, Westminster, on pregnancy and baby loss and the National Bereavement Care Pathway.
  • 9 October: Debate in House of Commons
  • 11 October: Event sponsored by the All Party Parliamentary Group on Baby Loss in the House of Commons to raise awareness of baby loss with MPs, followed by a remembrance service for MPs, peers and parliamentary staff.

Scotland

  • 3 October: Event in Scottish Parliament

Wales

  • 3 October: Debate in Welsh Assembly
  • 10 October: Candle Event sponsored by Mark Drakeford AM at Main Hall, The Pierhead, Cardiff

 

IMPOSSIBLY BRILLIANT HELP & SUPPORT NETWORKS // THERE FOR YOU 24/7

TOMMY’S

1 in 4 parents will have to go through the heartbreak of losing a child during pregnancy or birth. We need your help to stop these tragic deaths. Please join Team Tommy’s and help us find answers and cures.

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.

Learn more about the impact of our work here: http://bit.ly/2we9Cvk#Babyloss

DONATE >> Make a donation to Tommy’s, The Baby Charity.

THE MISCARRIAGE ASSOCIATION

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 babyloss@sands.org.uk, copying us in on awareness@miscarriageassociation.org.uk.

You can find more details on the Babyloss Awareness Week website.

Wave of light this Monday
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 – Friday9 a.m – 4 p.m) or see our website for other ways we offer support.

DONATE >> Make a donation to The Miscarriage Association

BABY LOSS AWARENESS

Share your experience – this could be by telling a friend about Baby Loss Awareness Week, talking about your experience or wearing a Baby Loss Awareness pin badge. You could also use our specially designed social media images on your website, Facebook, Twitter, Instagram, work intranet or noticeboard.

DONATE >> Make a donation to Babyloss Awareness.

SANDS – STILLBIRTH AND NEONATAL DEATH CHARITY

Sands is the stillbirth and neonatal death charity. We operate throughout the UK, supporting anyone affected by the death of a baby, working to improve the care bereaved parents receive, and promoting research to reduce the loss of babies’ lives.

Sands, the stillbirth and neonatal death charity, was founded in 1978 by a small group of bereaved parents who were devastated by the death of their babies, and by the total lack of acknowledgement and understanding of the significance and impact of their loss.

DONATE >> Make a donation to SANDS.

THE LULLABY TRUST

The Lullaby Trust provides emotional support for bereaved families, promotes expert advice on safer baby sleep and raises awareness of sudden infant death.

Working with the NHS, we run a national health-visitor led service for bereaved parents, Care of Next Infant (CONI) programme, which supports families before and after the birth of their new baby.

We are committed to supporting research to understand why so many babies a year die suddenly and unexpectedly in the UK and to find out more about how to prevent these tragic deaths.

The Lullaby Trust operates nationwide across England, Wales and Northern Ireland. We run an information line for parents and professionals (0808 802 6869) and a dedicated line for bereaved families (0808 802 6868). Both are free to call from landlines and mobiles.

We campaign tirelessly, lobbying government to keep sudden infant death on the public health agenda. Since we formed as The Foundation for the Study of Sudden Infant Deaths (FSID) in 1971 we have been pivotal in reducing sudden infant death syndrome (SIDS) by over 80%.

DONATE >> Make a donation to The Lullaby Trust

Miscarriage & Me // An Update: 3

As I’m currently bed-bound, I thought I’d try and get my brain back into some kind of ‘gear’ and write an update on my miscarriage journey. The final one, I hope.

See also:
READ MORE >> Miscarriage & Me.
READ MORE >> Miscarriage & Me // An Update.
READ MORE >> Miscarriage & Me // An Update: 2.

—–

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.
JUST LOOK.
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.

All my love,
C
✖✖✖

Miscarriage & Me // An Update: 2

Could not have picked cards that were more appropriate // YES MUM ORIGINAL Pack

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.

Oh those ‘Quiet Room’ paintings again…

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.”

– Information taken from NHS Guidelines for Medical Management of Miscarriage // Treatment.

What happens?

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.

Disadvantages?

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.

– Information taken from NHS Guidelines for Medical Management of Miscarriage // Obstetrics & Gynaecology Department

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 coat hypertension, 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.

Because we’re British and Tea makes everything OK again.

 

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.

All my love,
C
✖✖✖

 

Eating Out | GLASS, Berlin.

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WHEREGLASS, 10623 Berlin.

DATE: 23.10.2015

TIME: 7:30pm.

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We took the train to Zoologischer Garten and strolled along the chilly, but short, route to GLASS. Filled with the anticipation of a magical evening, celebrating Mr Memoirs’ 30th birthday, we actually passed GLASS! We backtracked and found the restaurant tucked away between building’s.

First impressions were great – we received a very warm welcome and an abundance of smiles. Good start. We were asked to choose where we would like to sit, we decided on a lovely table in the corner, by the window. We were immediately provided with the menu… hidden inside an envelope. Having previously had correspondance with the Host, Juliana, I had decided to keep the new menu a surprise! I had read several incredible reviews of Glass and of the Head Chef, Gal Ben Moche, so had high expectations – and I was not disappointed!

The tasting menu is available with 5 courses (€75 each) or with 7 courses (€95 each). We opted for 5 courses, as well as the wine pairing (€45 each).

The five courses I chose were:

ONION SOUP // GRUYÈRE / BRIOCHE

FOIE GRAS // PONZU / DUCK CONFIT (+ 10 €)

MINESTRONE // SCALLOPS / BEANS / ZUCCHINI

JERUSALEM // POULET DE BRESSE / CAULIFLOWER

CANDY BOX – Dessert – which has to be shared + 20 €

However, we were advised that we’d receive a surprise treat or two before our first course. I don’t think we could have been more shocked and in awe of the ‘treats’s. I, still today, a week on, cannot stop thinking about the first dish we received.

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Dehydrated soya milk with a miso sauce. Actually just the most incredible thing! I could have eaten a bowl full of this.

This was quickly followed by:

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Another sharing treat, the hot-cheese filled crackers to the bottom corners were my favourite! There was also sardine topped falafel and dehydrated egg’s and bacon.

We were then served another ‘breakfast’ style dish:

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This one was a sweet treat – with egg yolk just cooking to the bottom.

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“Taste on a spoon”. One of my favourite mouthful’s of the evening. Ravioli, filled with Oxtail broth, topped with oxtail, greens and parmesan. INSANE. This spoonful was just stunning. The ravioli popped open in your mouth, releasing warm liquor. I have never tasted anything like it.

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Next were served a homemade pretzel bun each, along with 2 slates of butter that were out of this world! One of the butter’s were made with olive oil – using olive’s from the vineyard where one of our wine’s were produced – the other was topped with volcanic salt.

We were then served the first dish we had picked from the 5-course tasting menu.

Mr Memoirs loves anything smoked and earthy, so ‘Forest in a glass’ with its mushrooms and vapour meant he was in his element!

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The waiter was incredible at describing each individual dish – and really set the scene with the Forest in a glass dish. Mr Memoirs remarked that it did indeed feel like he was walking into the depths of a forest, taking in the different scents of the forest floor. The smokiness lingered too – very clever.

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Onion Soup with Gruyere and Brioche. The dish was served with the onion consommé being poured at the table by the waiter, who explained all the fine details to the bottom of the bowl. A warming and tasty dish that left me cleaning the bowl with my leftover pretzel!

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Foie Gras with Ponzu and Duck Confit. There was a surcharge of an additional €10 on this dish, and it was so worth it! The Foie Gras was the best I’ve ever tasted and the duck confit ‘dumpling’ was divine. I could have definitely done with a gravy boat of the sauce however! It was just superb.

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“Minestrone” with Scallops, Beans and Zucchini. The waiter gave us a cheeky smile as he placed these dishes onto the table and declared, “This dish is a lie, it’s not really Minestrone! This dish is made using a lobster bisque…”. I’m not a fish easter, at all, so I was quite apprehensive about this dish to say the very least. But my goodness, it has completely changed my mind! The bisque was filled with bags of flavour, as was the pasta, beans and courgette. I also ate the majority of my scallop! Which is a huge achievement for me – and of course, a huge compliment for Glass. The scallop was so delicate and tasty, I couldn’t help but go back for more.

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Following this, we received another ‘treat’ – a Horseradish Sorbet. Never experienced anything like it. Just incredibly powerful and cooling, all at the same time.

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And now time for the ‘main’ – Jerusalem. Now, I am a person who would not order chicken on a restaurant menu. Chicken is a staple in our house, it makes for a quick and easy dinner for us all; or is reserved for Sunday lunch. Not special enough to order from a restaurant, in my opinion… That was my opinion until I tasted Poulet De Bresse, the most sought after chicken, all the way from France. I can’t even put into words how surprising this dish was – I didn’t want it to end. The chicken was like nothing you’ve ever tasted before, really very special indeed. The cauliflower details were so tasty, as were the peas and grains. Stunning.

…and then came the pièce de résistance. The Candy Box. Presented table-side, by head chef, Gal Ben Moshe. 

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The Candy Box is a magical display of childhood tastes. Obviously, liquid nitrogen is always a bonus too! This was the most memorable and fun dessert we’ve ever had. Gal presented our version of The Candy Box with “H B 2 U”, in celebration of Mr Memoirs’ 30th birthday. Very thoughtful.

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Also, shout out to Juliana who added a birthday candle to the proceedings!

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We chatted to Gal after we’d finished the meal and congratulated him on such a wonderful and unique dining experience. It’s going to be very difficult to top the evening we shared with GLASS. We will definitely be heading back to GLASS when the menu changes – which we imagine to be Spring as Gal tends to use seasonal ingredients. There is also a Vegetarian menu available; offering both the 5 or 7 course tasting menu.

I cannot rate GLASS highly enough – from the staff to the food, everything was just stunning. A relaxed atmosphere with the most unusual dishes. Simply a must whilst in Berlin! (And get a reservation in soon, I can see this restaurant gaining it’s first Michelin star very soon – it is already featured in the Michelin guide – so tables will be at a premium!).

Thank you GLASS.

MM.

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Restaurant GLASS
Uhlandstraße 195
10623 Berlin
Phone: 030-54710861
Email: reservierung@glassberlin.de
Website: glassberlin.de
Opening times:
Tuesday to Saturday from 18:00 to 23:00 clock

Mr Eli turns 2!

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I can hardly believe it. Our darling little boy turned 2 on Wednesday!

We had a wonderful day celebrating. We started off our day at 5:30am, (as we do most days!), we had lovely cuddles in bed before heading downstairs. We’d set the living room up the night before, ready for Eli to pounce bright and early the next day. We sauntered down the stairs and said a big “1, 2 3… HAPPY BIRTHDAY!” as Eli entered the room. He stood completely still, mouth gaping, in utter shock! It was amazing. We must have stood there for a minute before he gathered that all these bright and exciting presents were actually for him! It was so sweet. He spent the entire morning overwhelmed, not quite sure where to look or where to run to next. It was amazing to see him opening presents this year, and even better when he realised what was actually beneath the wrapping paper. Just the best feeling in the world – I could have watched him all day,  as he was just enjoying EVERYTHING. He even blew out his candles himself this year! (I spent the day previous baking his cake – never have I ever been so stressed in the kitchen in all my life! Blog post on the cake to follow)

We went off to the Big Smoke a little later than anticipated due to the present-opening overload. The weather forecast was torrential rain for the day… but it was bright when we got to London Zoo; and swelteringly hot by mid-afternoon. We went to Colchester Zoo for Eli’s 1st birthday last year… think we may make a Zoo visit it an annual thing for Eli’s birthday as he absolutely LOVES the animals! To the extent that he cried when we would leave a section of the zoo to move onto the next area! His highlights were definitely the giraffe’s, hyena’s, goat’s (!!!) and all the different monkey’s (takes one to know one!).

We had a very full day at the zoo and Eli had TWO naps! TWO! We had a not-so-good experience at Strada in Camden and headed home – we didn’t get in until 10:30pm! Time certainly does fly when you’re having fun!

Eli is the happiest little boy who loves adventure’s. It’s incredible seeing him grow – I never thought we’d actually be able to see it happening before our very eyes, but he is developing every single day. He completed our lives he arrived on 6th August 2012 and we couldn’t be prouder parents. Eli is quite literally magic.

Our precious boy, always ask questions – always be curious. We love you to the moon and the stars and back!

Here are some snaps from Eli’s 2nd birthday celebrations!

#MrEliTurns2

MM.

x

#MrEliTurns2

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So there we have it. As of 21.43 on 6th August, we have our very own 2 year old human!

 

 

 

 

The 5:2 Fast Diet | And so it begins…

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I’m rubbish with diets. I like food and wine far too much. I don’t really exercise; but I do walk 2 hours a day, everyday, to take Eli to nursery and back. So I’d say I’m lightly active. I’ll be honest here, because I think it’s important, I need to lose around a stone. Maybe even a little more. I feel dreadful. I’m exhausted, I’m sluggish, I’m bloated – and for some reason have recently acquired a sweet tooth. The 5:2 diet is brimming with health benefits, as well as the incredible weight loss results. Without going into the massive science and logic behind the diet… it sounds like the perfect for us. Due to work, I barely have lunch until 2/3pm anyway and we never have our tea before 8:30/9pm due to it taking Mr Memoirs so long to get home. We I do however have trouble with portion control – I cook for a family of ten, so we eat for a family of ten! Always have.

A friend had started the 5:2 diet a few weeks ago and has had great results so far. It took a while for me to get my head around it. Giving up food for an entire day, not once, but twice a week? NO WAY, GET REAL. No way could I do that! But actually, as a female, I get 500 calories for my fast day. If you’re lucky enough to be male, you get 600 calories. Bonus round. It doesn’t sound like a lot – but if you’re clever, and make the right choices, you can actually still have 3 meals a day! YES WAY!

Yesterday was my first fast day. It is advised by fellow 5:2’ers that you try and miss breakfast (I know, it goes against everything you’re taught growing up!) and try and last as long as you can throughout the day without food. Meaning you have more of those important calories left for your evening meal. I’m already a massive water drinker. I don’t drink tea or coffee. I don’t drink fizzy drinks. So at least I don’t have to give extra’s like that up. I kept gulping down the pints of aqua till around 12, when I quite literally felt like my stomach was eating itself. I also had a headache. Not wanting to ‘waste’ my valuable calories on paracetamol, I opted for a 13 cal beef OXO cube drink! This replaced the salts that my water intake may have been taking away. I somehow, managed to get to 3:30 and had my Knorr soup, 172 calories. I then had a medium-banana on my way to pick Eli up from the nursery, a around 89 calories. And for my big meal of the day, we had the below – Halloumi salad, at 215 calories, at 9pm. I don’t think I’ve enjoyed agsalad so much in all my life. I will be continuing to collate 5:2 recipes over on my Pinterest, here >> 5:2 Diet Recipes. I had a total of 489 calories yesterday and I SURVIVED! I feel proud to get through Day 1 of fasting.

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Halloumi Salad, by 5:2 Recipes Blog. Serves 1, 215 calories.

This is by far the most yummy salad I’ve eaten… I’m not sure if it was because I was so looking forward to my evening meal though! But it was delicious, calorie counting or not. You could easily slip some chicken in there to bulk it out. But it was zingy and filling – am looking forward to having this again!

Do you have any swear-by 5:2 recipes? I would to hear your recipe ideas and experiences with 5:2!
MM.

UPDATE | Mr Eli has Talipes and Benign Paroxysmal Torticollis.

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Last week wasn’t a very nice week, at all.

Mr Eli has been suffering with his Torticollis more frequently since I wrote my epicly long blog post, Mumsnet: This Is My Child | Mr Eli has Talipes and Benign Paroxysmal Torticollis. We haven’t had any attacks with the accompanying sickness and drowsiness since Eli’s 1st birthday; it has been just his head tilting to his shoulder. He’s been teething quite badly (well, he’s been teething constantly since he was 8 weeks old…). His Torticollis tends to flare up more when he’s teething – or when he reaches milestones. We were so hoping he’d started to outgrow the attacks.

His neck had been tilting to the left side since 24th October – coincidentally, OH’s birthday. It finally straightened up, to a perfect mid-line by Friday 1st November, 8 days later. Then on Tuesday 5th November Eli’s head started to gradually tilt towards the right. He had been unaffected for just 3 days. By the evening of Wednesday 6th November, poor Eli looked horrendously uncomfortable and was very clingy. We had a physio appointment at the local hospital at 11am on Thursday 7th November. This would be the first time our physio had seen him so badly affected with the Torticollis.

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Eating an apple after breakfast on Wednesday 6th November.

On Thursday 7th November, Eli woke up crying. He never wakes up crying… apart from when he’s been severely affected with his Torticollis, and we’re due an attack.

I struggled to get Eli into his high chair, he was so off balanced and crying in discomfort. He barely ate any breakfast. His head was completely touching his shoulder.

I got us both ready for the hospital appointment; we walked the 25 minute journey and Eli was fast asleep as soon as he went into his pram. He NEVER sleeps in his pram when we’re out and about now. He’s too nosey.

When we got to the hospital he started to wake up with the lights and noises. As he gradually came round, I noticed his eyes weren’t quite right. They looked misaligned. I pulled him out of his pram for a cuddle and closer look. And as I did so, he projectile vomited. EVERYWHERE. He was having the first full blown Torticollis attack in 3 months. His eyes rolled back and he passed out into my arms. There were such lovely people in the waiting room, rallying round with tissues and water for us both! It’s so scary and upsetting when it happens. This is the first time it’s happened outside of our house too.

I then went into the physio room. Our physio was in a state of shock I think – she’s always seen him when he’s been unaffected and his usual jolly self. She admitted she never realised the extent of the attacks and began noting down everything that had happened, so she could write to the big hospital in Chelmsford for a referral to a specialist.

We know that there is no treatment or cure for Torticollis. It is something that Eli must grow out of, and should grow out of by the time he is 3. But I would still like him to be seen by a specialist.

He was sick a further 3 times in the physio room. The physio took a video of how the Torticollis was affecting him during his attacks; so we can use it as reference for any further appointments, where hopefully Eli will not be affected. OH and I watched this back on Thursday night together and it was very, very distressing to watch back.

Eli continued to be sick all of the day on Thursday – something that doesn’t usually happen. Eli had changed through 6 tops, 2 pairs of trousers and I used 12 muslins and 4 tea towels to clean things up. It was too chilly to not have his clothes on. I kept him nil by mouth… aside from syringing water into his mouth as he just couldn’t drink from anything else. He slept on me in-between the sickness. As he snored in my arms, I sobbed. I don’t think there’s anything that quite prepares you for feeling so helpless as a parent – not being able to make Eli better is just the WORST feeling in the entire world. For his last nap that day, I put him into his pram – where he slept for 90s mins.

When Eli woke up, he was chatting away. I pulled him up and out of his pram for a cuddle. He wanted to be down and straight away grabbed his beaker! He was almost back to his usual jolly self again – aside from his head was still tilting to the right, just not as severely; but it was a huge improvement on how it had been when he woke up that morning. It was almost as though the earlier part of the day hadn’t happened.

He ate toast, a banana and some biscuits for his tea that evening, along with 2 beakers of water. He went to bed normally with his bottle of milk.

He was clingy on Friday 8th November and looked very uncomfortable still. His balance was still affected by the Torticollis so he was very clumsy and couldn’t sit upright on the floor or in his highchair, choosing to slant to the affected side.

Fast forward a few days to today. Eli is much better now, sitting comfortably and back to his usual routine. His head is more or less perfectly straight in the mid-line again. After previous attacks, his head has straightened back during the course of the day. So this has been a lengthy process, this time.

Eli has an appointment to review his Talipes at the end of this month – which we’re so looking forward to as his feet are remarkable now. His referral regarding his Torticollis will be at the beginning of December, at the same hospital.

If you or your child has been affected by Torticollis, or indeed Talipes, please do get in touch. I’d really like to hear your experiences with both – Torticollis a rare condition and there is not a lot of information out there.

MM.

Mumsnet: This Is My Child | Mr Eli has Talipes and Benign Paroxysmal Torticollis.

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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.

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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…

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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.

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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?!

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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!

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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, pallorataxia, 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?

MM.

Weekly Update: 41 Weeks Pregnant // We’re overdue!

Well, I definitely DID NOT think I would be writing a weekly pregnancy update at 41 weeks and 1 day pregnant, that is for sure!

But it’s been quite a week so here is my update, thus far.

I had the first of my two ‘Sweeps’ on Wednesday. During my appointment at Broomfield, I met with my lovely Midwife, Caroline and Consultant. Both parties were concerned about the size of Boy – obviously, he’d measured up large for dates since Week 28. But on Wednesday I measured at 44cm (44 weeks pregnant). SO! They both agreed that I should not go past Sunday without having Boy as he’s looking too large now. So another Sweep was also organised for Friday (yesterday), incase the first one didn’t work. I was also tested for MRSA and given the usual checks, all of which were fine.

The first sweep did not work, despite me having really painful period pains and contractions for 10 hours! So feeling a little despondent, back to the hospital we went again yesterday. A second sweep was performed and the Midwife really gave it a good go – she even tickled Boy’s head – which was a bit strange! When we got home I was convinced the sweep had worked! So we had yet ANOTHER curry and bounced on my ball as we watched more Olympic’s 🙂

But no, the second sweep doesn’t appear to have worked either! BOO 🙁

I also just wanted to point out that a sweep really doesn’t hurt. Yes, it was uncomfortable – but it’s going to be. I can honestly not believe that people have said this procedure is painful on forums and other blogs.

So, it looks like we’ll be going back to the hospital tomorrow to have the induction kick-started. I have to call in advance to ensure we have a bed and will be given a Propess Pessary when ready. We’ll be staying in the hospital for at least 6 hours and will be sent home if nothing happens. Then we have to go back within 24 hours for assessment and if nothing else happens, we’ll be having my waters broken and placed on a drip. Which I’m REALLY hoping won’t happen as I desperately wanted a water birth. Water has helped so so much during my pregnancy – I’ve literally not been out the bath! It’s been so helpful for my SPD pains.

So keep your fingers and toes crossed that Boy decides he wants to come naturally tonight, so we don’t have all the hassle tomorrow!

MM.

Weekly Update: 40 Weeks Pregnant // Today is our DUE DATE.

Last Saturday we went to a wedding! This is us at 39+1 weeks.

Baby size at 40 weeks: 50 cm long.

Baby weight at 40 weeks:  7.6 + lbs

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Well, here we are. The day I didn’t think we’d actually get to! Today is our DUE DATE. Actually cannot believe that Boy hasn’t arrived before now!

I’d convinced ourselves that I’ve been in “slow labour” since Monday of this week. I’ve either been going to bed with VERY regular and quite intense contractions… or waking up at 3:30am with the pains. The pains start off as period style cramps (front and back) and nausea, then I get the tightening across my tummy. I’ve also had the most excruciating stabbing pains in my undercarriage at the same time. It’s been the most frustrating thing EVER. Every night we’ve gone to bed thinking “THIS IS IT!!!”. Last night felt like Christmas Eve and we went to bed incredibly excited! But Christmas hasn’t arrived so far today 🙁

BOOO!

Now I’m going to have a little rant – please excuse me! 🙂

I went for my final Midwife check up yesterday and have to say I wasn’t (and still aren’t!) happy with how it went. Firstly, there was a student midwife left in charge. No other help at all! I’d normally have my assigned midwife, and then a student if she had one that week. So I was really very shocked. Now, I do not mind students or trainee’s to do the usual checks – I’m all for it! How else will people learn, without practical case studies!? But yesterday was my last appointment, I had lots of questions and frankly the midwife just wasn’t experienced enough!

Firstly, she did my blood pressure and it came out as 110/80. Which is about usual for me, as per my notes (which, she did look through after checking each and . She said my blood pressure was HIGH? But this blood pressure is ‘optimal’ if anything! I ignored it.

Then it came to measuring me. Now I’ve measured big the entire time. Last Thursday I measured 42cm (by two different people!). Now I know this is not an exact science and normally don’t read anything into the fundal measurements – especially since we had our growth scan a fortnight ago! But she measured me at *just* 38 weeks. So obviously, I was dubious. I asked her to re-measure me as I can’t have lost 4cm in the space of a week – I’m usually growing 3cm a week! She re-measured me and said “Oh yes, about 40cm”. Whatever.

THEN she went to check Boy’s heart rate. But nothing was registering on the doppler. She started to panic, pulling the probe across my tummy. I showed her where to locate his heart beat. But it still wasn’t registering on the monitor… She blamed the machine and said it must be broken. But it wasn’t broken, SHE HADN’T PUT GEL ON THE PROBE! Struth.

THEN! I asked if she was going to examine me. Especially considering the contractions and pains I’ve been experiencing. She said she wasn’t allowed due to “policy”. I was completely under the illusion that you were given an internal at 40 weeks, to check your cervix/dilation?! Apparently not at my hospital! Or was it the case that she wasn’t supervised?! So frustrated!! And it’s doing nothing for my Oxytocin levels!

So I’m not very happy. At all.

My next appointment will be for my sweep at Broomfield Hospital on Wednesday 1st August. But hey, Boy is DEFINITELY coming this weekend, so we won’t be attending that appointment 😉

 

So what is happening to baby boy this week?

Fig 1: http://www.babycentre.co.uk/pregnancy/fetaldevelopment/40weeks/

After months of anticipation, your due date has been and gone, and… you’re still pregnant. It’s frustrating, but lots of women find themselves in this situation. Your baby continues to shed the greasy, white substance (vernix caseosa) which has been protecting his skin. If he shows no sign of making an appearance after another week, he may have slightly dry skin when he arrives.

Your baby has mastered all the skills he’ll need after he’s born. He can instinctively search for his thumb and suck it, just as he will search for your breast for a feed soon after birth.

 

MM.