Having suffered quite badly with SPD throughout my pregnancy with Eli, I was already feeling those familiar pregnancy aches from quite early on in this pregnancy. From around 10 weeks in, I was beginning to struggle with sleeping so looked into pregnancy pillows. I’d had a pretty flimsy one last time (7 years ago, there weren’t many sleep supports on the market!). It did it’s best, but it definitely didn’t offer me the support I really needed. So, as long as there was good enough evidence/positive reviews, we agreed we would pay the extra and really invest in the pregnancy pillow this time around.
I asked the question – Can you recommend a brilliant pregnancy pillow please? – to my IG stories following. The top three answers were:
I wanted to wait until post-12 week scan to order, because I still had pregnancy anxiety. After a lot of further research, and although the most expensive of the pillows we looked at, post-12 weeks we ordered the BBHugMe Pillow in the luscious Dusky Pink colourway. (The pillow also comes in several additional colours – there are also additional spare colours available too – I’ve added these all to my SHOP. CLICK HERE). We felt there was more than enough evidence to suggest it was the best one for me – plus it could be used post-partum with the babe being able to relax on it/Eli being able to relax on it/us being able to relax on it, as well as a support whilst feeding.
We managed to get quite a good deal on the pillow by going via Topcashback and then had a promotional code for Jo Jo Maman Bebe itself! The pillow looks great in the bedroom, it really doesn’t look out of place aesthetically – like my old one did – it looks like its just a luxury additional pillow! It also looks smashing on the sofa, where I have been using it more frequently when laying watching TV (when I’m not swaying on my Yoga ball of course).
I’m now 30 weeks pregnant and I can quite honestly say that this pillow has changed my life. Nay, it’s changed the life of Eli and indeed, James too! We all absolutely love it.
At 30 weeks, I’m currently up once in the night for a toilet trip – by this point with Eli, I was up several times. I’m not saying this scientifically, but from my experience, I’m going to put my excellent (current) bladder routine down to the BBHUGME Pillow. The way it supports my bump and pelvis MUST be working alongside in support of my bladder too.
And whats even better is, I get so comfortable, so easily and quickly, that I’m drifting off to sleep in a much more relaxed way too. I’ve often had to read/watch TV/listen to music to fall asleep – I’ve always need distractions to ease me off – but not now! I can happily and proudly say, I fall straight to sleep, on my own, no distractions necessary! I can see this pillow in bed with me for the long run… sorry James!
SO, to surmise, I’d say so far, this is the best pregnancy item that we’ve ever bought. Yes, its more pricey, but you cannot put a price on the comfort, support and peaceful slumber I’ve been able to get from the pillow this time. This pillow can be adjusted to just how you like it as the beads inside are flexible – this means the pillow will grow with all shapes and sizes throughout pregnancy and beyond. It comes with a carry bag if you’re travelling about – and guess what else? The cover is machine washable – praise be!
For product details, information on the design of this product and the experts behind the BBHUGME pillow, please read below.
MORE ABOUT THE BBHUGME PILLOW
Developed by natural and medical health professionals
Bbhugme was created by three chiropractors from Norway, Hilde, Ann Kristin and Elisabeth, who shared a deep interest in chiropractic care of pregnant women, moms and babies. They saw many teary, sleep-deprived women who were suffering from pelvic and back pain before, during and after pregnancy. The three realised that the women needed even more support and care – a long-lasting, take-home solution that could support them beyond the care they get at clinics. This was the origin of the bbhugme pillow.
A better pillow
The three chiropractors got together with designers to make a unique pillow that mothers could count on for support. The pillow comes from focus on the details that mapper. The right shape, filled with a specific size and type of mirco-beads, gives sturdy, but flexible support for every body type. The pillow fabric is elastic, yet strong enough to avoid being ripped when used. Allergy- and eco-friendliness are also important. For nursing the baby, it helps if the pillow can be strapped around the body. Zippers and velcro aren’t soft enough, so we use a tie that allows mothers to remove and wash the outer sleeve.
The hard work that went into the design process was recognized in 2015, when bbhugme won “Best Design Award” from The Norwegian Centre for Design and Architecture.
Serving mothers around the world
From serving Norwegian customers, the company has grown and is now expanding into Europe and the USA. Sales through retailers, chiropractors and online are growing quickly. What remains the same is that we’re a company driven by professionalism, passion and care for the pregnant women and mothers that we created bbhugme for. It’s their stories of relaxation, contentment and comfort that have made this project worth it.
Meet the experts
bbhugme® products are tested and quality approved by out panel of specialists in health, motherhood and design. They know a lot about caring for women and new families. They’re also curious and caring, always out to learn more – and share what they know.
DR. HILDE TAVARES
FOUNDER | CHIROPRACTOR
Hilde is an innovator, instructor, speaker, entrepreneur – and mother to three lively children. She’s practiced family wellness care in Norway since 2002 and has an advanced degree in musculoskeletal health in pregnancy and paediatrics.
“I’m passionate about supporting and caring for women and their partners through pregnancy, birth and infancy.”
ANN KRISTIN HOMDRUM
FOUNDER | CHIROPRACTOR
Ann Kristin is a chiropractor, author, speaker and entrepreneur, who has dedicated her life to learning and teaching about conscious health decisions. She specializes in chiropractic care for pregnant women and children and breastfeeding support.
“I believe in enjoying family life to the fullest, through a natural and healthy lifestyle.”
PSYCHOLOGIST | PSYCHOTHERAPIST
Tine is a specialist in neurology and cognition for the female brain with hormonal influence. She runs a clinic in Oslo, offering
therapy for individuals and families, in partnership with other experts in pregnancy, yoga and holistic medicine.
“I’m dedicated to supporting and preparing pregnant women and new families for a new phase in their lives.”
ÅSA LIND MELIN
In 25 years, Åsa’s nearly done it all, in midwifery, birth, pregnancy care, and women’s health.
She’s trained in baby massage and Shiatsu massage for pregnant women, worked in delivery wards, managed a private practice and operated her own midwifery practice, and counselled clients on pregnancy and birth.
“I help prepare families for the rollercoaster that starts with a new baby arriving in the home.”
—– For clarity, this is not a sponsored or paid post – but does contain some Affiliate links.
I only shout about items that I genuinely believe in however, so be safe in the knowledge that I’m in love with this product!
A few weeks back we had our 20 week scan and we’re ridiculously excited to say, we’re having a baby GIRL! 🖤🖤🖤
An ACTUAL baby girl! ⚡️🖤✌️
I’m almost 23 weeks pregnant now and still feeling waves of disbelief that I have a little girl growing super well inside me. But believe me when I say, we would have been happy either way. Especially considering how long it’s taken to get to this point – a healthy baby is all we wish for.
Eli has been desperate for a sibling for as long as I can remember now and he will be the BEST Big Bro, we just know it. He reckons his little sister is going to be “annoying” but we know he’s happy deep down 😂 Oh and he refused to have his photo taken with the scan of his little sister (!!!) because he was down with the pox 🙈
I always vowed that if we had a girl, I wouldn’t be into dressing her in all that pink stuff! Well, when I said that, I might have been lying because so far, all I have bought is PINK! Ha. It’s all just too cute though man!
The pictured Big Bro Tee is from the gorgeous @lennieandco; which we bought it ahead of our last pregnancy in 2017. It’s been sat in Eli’s wardrobe, waiting for a happy baby announcement since. Incidentally, the 20 week scan that we had, was originally scheduled to be Friday 15th March – which was our due date for my second pregnancy. It would have could have been a 1st birthday for that pregnancy🌈 I had to get the date changed. It just didn’t seem ‘right’. It all feels a little bit happy sad🖤
Today is 15th March. The due date given for our second pregnancy✨
Today could have/would have/should have (???) been a first birthday for a little one we will never hold. A little one we will never meet. A little one who gave us hope and dreams.
Having had such wonderful news at the 20 week scan of our third pregnancy on Tuesday; it’s safe to say this week I have been on a bit of a rollercoaster of emotions. Pregnancy after loss is such a tricky and confusing and emotional time to try and navigate your way through. Happiness and sadness. Guilt? It’s a weird one. But I’m allowing myself to feel all of the feelings.
I know a few of my friends IRL and on here are going through a tough time this week. So this page from @rupikaur_’s “Milk and Honey” is for you too. Do not resist giving yourself space and time to think – to grieve – to feel anger, hurt, pain and happiness too.
If you can’t see the image above, the verse reads:
it is part of the
human experience to feel pain
do not be afraid
open yourself to it
I’m allowing myself to remember today. But also to breathe the relief in that I have a beautiful, healthy 🌈 baby, wriggling inside me right now. And I’ve never felt more lucky 🌿
Pregnancy and your mouth. What’s being pregnant got to do with your mouth, I hear you ask?!
Well, stranger on the internet, I’m talking all about how Pregnancy can affect your oral health. In this case, my personal experience with both my gums and teeth during my pregnancies. Because how conceiving a baby can send your oral health into turmoil is something that just isn’t spoken about. It’s another one of those ‘pregnancy treats’ that you don’t find out about until you’re struck down!
My teeth were ground to bits when I was pregnant with Eli – for some reason, being pregnant gives you more of reason to grind those toothies. I’d also clench my teeth together too. As I type this, my teeth are currently clenched. But I think that this current clenching is due to stopping myself from feeling so nauseous. Some women tend to grind their teeth or clench their jaws, especially during deep sleep or times of stress. Teeth grinding is also know by the medical term ‘bruxism’. Sometimes, teeth grinding can lead to several problems. It can wear down tooth enamel, which it had/has in my case and can cause chipping of the teeth, increase the sensitivity of the teeth to heat and cold and cause pain to the face and the jaw. I also tended/tend to wake up with a sore jaw and headache. For this reason, I was fitted with a mouth guard for use when sleeping when I was pregnant with Eli. However, once Eli arrived, my teeth also had a shift about and the guard no longer fit properly!
Your teeth are more sensitive during pregnancy, even from the very beginning. Hormonal changes during pregnancy can make your gums more vulnerable to plaque, leading to inflammation and bleeding. This is also called pregnancy gingivitis or gum disease. Morning Sickness All Day Sickness is another treat that can cause some serious damage to your teeth and gums. During bouts of sickness and nausea, make sure you rinse your mouth with plain water after each time you vomit. This will help prevent the acid in your vomit attacking your teeth. Do not brush your teeth straight away as they will be softened by the acid from your stomach. Wait about an hour before doing so.
I wasn’t sure if the old wives tale of “you lose a tooth for every pregnancy” rang true – but I did have a wisdom tooth extracted shortly after Eli was born and I’ve had a total carry on with my teeth of recent. All of which is why I am beyond thankful to the amazing NHS for offering their dentist services for free during pregnancy.
Luckily, here in England, Pregnant women can apply for a Maternity Exception Certificate via their Midwife or GP. Details of which you can find, here.
At time of this blog post being published, in February 2019, if you’re pregnant or have given birth in the last 12 months, you are entitled to:
free NHS dental treatment
free NHS prescriptions if you have a valid maternity exemption certificate
A maternity exemption certificate:
entitles you to free prescriptions
can be used to prove your entitlement to free NHS dental treatment
You’re also entitled to continue to use your exception card for 12 months after your baby is born. If you did not apply for a maternity exemption certificate while you were pregnant, you can still apply at any time during the 12 months after your baby is born.
This pregnancy started with swollen, painful gums that bled and a struggle to brush my teeth without borking 😭 I was waking with that pain in my jaw and ear from clenching and grinding my teeth in my sleep and had impressions done for a new mouth guard; in hope it would bring some relief.
Fast forward to two weeks ago I went to the dentist again about a troublesome tooth that had cracked. It was so painful… or at least I thought it was painful until my dentist went gung-ho with a drill in an attempt to revive the old filling and where the tooth had cracked in half. The dentist filled the gaps and sent me on my way. Taking heed of the NHS advice to avoid painkillers; I basically laid my sad little face on a hot water bottle for a week.
By the Friday of the same week, I had cried every single day with the pain. After all my previous dental treatment (so many tooth extractions, braces, a retainer and my wisdom tooth removed), I’d never had pain like this. Another appointment saw that the nerves were damaged in my tooth where it was drilled earlier in the week. I was offered Root Canal treatment or pulling it out. The best option for me was E X T R A C T I O N. I just wanted the tooth gone, I was in total agony.
Brilliant. Nee bother. I’ve had half of my teeth removed since age 9, so loosing another one wouldn’t be a problem 🤷♀️
The anaesthetic soon got to work and my dentist began to pull and tug. She was pulling with such force she knocked my safety goggles off. 25 minutes later and a lot of me moo’ing like a cow (thinking I was being a wimp…) , I went pale, floppy and a first aider was sent in. I’d had a dip in blood pressure, blood sugar and it turned out that I had not been given enough anaesthetic. I was given a tablet, more anaesthetic (5 needles worth in total) and a further 25 minutes later the sodding tooth was out; in around 20 pieces. I’ve never had an extraction like it. I went home, totally shook.
My jaw, cheek, ear, sinuses and the gum were so swollen and I was in such agony. I threw up and eventually I gave in an swallowed two paracetamol and laid my face upon my trusty hot water bottle once again. It looked like we could see my jaw bone in my gum and I didn’t have a blood clot on the gum at all. Because of this, I was religiously, but gently, swilling with warm salt water to be on the safe side.
By Sunday evening, I was still in such pain – but just thought again, I’m being a right wimp, my pain threshold isn’t as high ‘cos pregnant. But Monday morning came and my gum wasn’t right. My mouth tasted vile. The ‘stuff’ we thought was ‘granulation’ on my gum, was in fact infection. Straight back to the dentist I went. As my dentist is beyond cautious of how she treats pregnant women, she diagnosed Dry Socket and cleaned out the infection then injected something into my gum. I was not prescribed antibiotics or painkillers, as my dentist felt that my body was doing a “good job” of attempting to recover the gum itself. Some medicine was packed into the socket and I was sent on my way. The medicine tasted rank – kind of like chewing raw cloves, but I got used to it fairly quickly. I’d say by 3pm, I was more of less pain free. I couldn’t believe the relief. I cried because it was so weird to feel more normal!
I went to bed on Monday evening feeling pretty smug that I no longer needed my hot water bottle. But POW, its 3am and your gum and jaw and ear and cheek and sinuses are back to screaming in pain. BRILLIANT. The infection had pushed the gauze and whatever else was packed into my gum, out. The taste was unbearable. I couldn’t fall back to sleep.
I woke up today feeling sick, lightheaded and my mouth tastes absolutely vile. I’m 5 tablets into my course of Amoxicillin however and I’m bloody hoping they do the trick because there is still pain there too.
Moral of the story? Visit your dentist regularly. Especially when you’re pregnant!
(If this is your first time here on my blog, HELLO! I had a miscarriage in August 2017. It wasn’t ‘over’ until the ERPC in October 2017.. This is a lengthy post – as always, I am sharing our experience as a means to continue the conversation of trying again after loss).
OK, I’ll start from the very beginning…
A year ago (January 2018), I stopped drinking. I started taking the recommended dose of Folic Acid and additionally, Vitamin B12. (Just incase). The “better” eating happened. Then when we moved to Manchester in May, I began the exercise – cycling to school and back twice a day was also helping my mood! I’d been on the pill for a few months post-miscarriage to get my periods back into a regular routine, but came off them at the start of 2018. Every single person you speak to regarding your miscarriage will tell you, “you’re most fertile after having a miscarriage… you’ll fall again quickly”.
We decided that we weren’t going to look at fertile days, or take ‘trying’ too seriously. After my Miscarriage, I didn’t want ANY added stress or pressure. We wanted it to happen on our own terms… after all, “you’ll be amazingly fertile after a miscarriage“.
But after our trip to Florida in June, I started to get a bit anxious about trying again and opened up my FLO app to begin tracking my periods, mood, health and everything in-between. From then on, we began trying on the most fertile days of the month.
September came and I still hadn’t fallen. Now, I understand that this really isn’t a long time, compared to other couples who try and try and try for years. But I’d fallen pregnant with my first two pregnancies within 3 months of trying. Granted, I was a lot older now – but I am only 32 still. Not exactly elderly! I lost a little weight and continued cycling and enjoying walks in the great outdoors (thanks to our new National Trust membership!). I knew fine well that out of every 100 couples trying for a baby, 80 to 90 will get pregnant within 1 year. The rest will take longer, or may need help to conceive. But at the back of my mind, the whole “shouldn’t you be mega fertile now?” voices were constantly trolling at me and I couldn’t help but worry that something else was going on in my body, that:-
I had no control over (ie, my Endometriosis or something more sinister…
Something had ‘broken’ during my ERPC procedure that had left me with some kind of scarring…
Or worse, had everything actually ‘come away’ following the ERPC operation?
So, September onwards, we began tracking my ovulation and BBT (Basal Body Temperature). I bought a few packs of the ‘cheapie’ ovulation kits by One Step and the results were so interesting – see below:
The only problem with tracking your Ovulation is that, your day begins by thinking about your fertility… This meant, I couldn’t really escape my own pressures of falling pregnant. It was alllll I could think about. To the extend that I began to distance myself from outside of this little bubble. You can clearly see where I began a minor social media hiatus!
I was tracking everything via the app. Every little niggle! You track so much and think about it so much, that your body eventually convinces you that you’re pregnant. (Hence the early testing in September and November). But when you’re tracking everything, you’re reminded every month when you’re bloody period arrives that you’ve failed again this month. It’s the most heartbreaking few days – every time you go to the loo and get that little reminder that your body wasn’t up for fertilisation. To top it off, we had Eli listening to my tummy to check if a baby was in there… he’s been desperate for a sibling for as long as I can remember now.
On Thursday 15th November, I was making Eli an outfit for BBC Children in Need. Looking back at my tracking, I’d had a few ‘off days’ . I’d had period type cramps and felt so light-headed. I wasn’t due on my period for another week but thought I could be coming on early. Then on the evening as I was finishing sewing, I managed to stab my hand with a pair of exceptionally sharp fabric scissors. Normally, I’d be fine and get a plaster. Blood does not bother me, heck, once you’ve watched 24 Hours in A&E, you can muster pretty much all of the blood. The DRAMATIC scenes that ensued are frankly, pure comedy. I was freaking out so much. I had to lay on the bathroom floor for fear of passing out. Never, have a I ever been like that.
The next day I went to the GP to see if I could get a Tetanus injection – just incase I was pregnant. I didn’t want to get an infection. Luckily, it turns out I was up to date. Phew.
Something still didn’t sit right with me about the way I had so ridiculously overreacted the night before. So at lunchtime, I went upstairs and did a quick One Step pregnancy test. I was 99% certain it would be negative as I’d had the cramping… it was also the very first time I’d ever done a test without James by my side.
I couldn’t believe my eyes as the second line appeared in 2 1/2 minutes. Again, I nearly passed out and laid on the sofa to compose myself. I thought I better ring James. I thought he’d go mad with me for doing the test without him…. I’d kind of played it cool on the phone. I’d convinced myself that the cheap test couldn’t POSSIBLY be correct. And 5 whole days before my period was due?!
I convinced myself it was a false positive. It HAD to be, right?
At school home-time I told Eli we needed to pop to the chemist to get something for my tummy… he immediately said “Why, is there a baby in there now?!”. “I really hope so darling”, I responded.
I got 4 of the Superdrug own pregnancy tests – the same ones we’d bought when we fell with Eli. So I had some trust in them. I’d used a variety when I fell pregnant in 2017 and going back to the Superdrug own brand tests made me feel a bit safer, weirdly.
I waited on tenterhooks for James to get home from work – and with an evening urine sample, the results were… (see below)
The second line was so faint, I couldn’t see it and had to put the picture under all of the filters on photoshop to see it. But, as I said when I fell with Eli, you can’t be a little bit pregnant, can you!?
We told Eli our news immediately. We wanted to be open and honest with him – especially as he had seen me go through our miscarriage. We told him that we would tell all our family and friends at Christmastime as a present! (And you can’t tell anyone when its a present, can you!?) HOW Eli managed to not tell anyone before Christmas, I will never know. But that kid man, he is just a total boss.
Speaking of which, I went on Timehop and we realised that we’d done our first pregnancy test with Eli on the SAME weekend – 18th November 2011. Strange; we must have conceived this baba around the same time as we conceived Eli.
Over the next few days, POW, the pregnancy symptoms came in thick and fast.I felt so sick. I was so tired. And continued to track pregnancy tests and my symptoms – just incase.
I had every single pregnancy symptom going; and then-some.
My skin burst into the worst cystic acne ever. Mostly on my lower cheeks and jawline.
‘Morning Sickness’ – except, it’s not just the morning, is it. It’s ALL DAY and ALL EVENING.
The Exhaustion – I was falling asleep after dropping Eli off at school and then again straight after tea.
Extreme bloating – by 7pm, I was looking mega preggo.
Food aversions – the smell of cooking is just the WORST. Couldn’t face meat. Couldn’t face big meals. Ended up surviving on plain boiled rice and rice cakes. Good job I was taking ALL of the pregnancy vitamins by this point.
Couldn’t face Tea or Coffee (still can’t do my beloved (now decaf) Coffee, even the smell is nauseating).
Brushing my teeth became the enemy – every single time I’d bork.
Sheer, unadulterated, brain fog – not being able to articulate what you want to talk about or not being able to remember why you entered a room; or even why the kettle is in the fridge is somewhat frustrating and also kinda scary.
Increased thirst – which is quite something for me as I’m always guzzling water as it is!
Extreme Overheating – I had repeated ‘hot flashes’ that made me feel so faint. Luckily, touch wood, I’ve not fainted.
A weird one now – an version to LEGO. ACTUAL LEGO. It wasn’t that I had a want to eat it or anything, but the sight of Lego made me so, so nauseous! I had to have Eli pack it all away and not play with it in front of me. SO WEIRD. I have no idea what caused it or why. But 5 weeks on, I’m finally becoming ok with the Lego being around again.
By 10th December, we were being seen at the Early Pregnancy Unit in Stepping Hill Hospital for an early Scan. By my app, I was exactly 7 weeks pregnant. I felt anxious but the full-on symptoms gave me hope that we would perhaps see a pregnancy sac.
And low and behold, as soon as the scan went on, the heartbeat was found. The tears of relief rolled down my cheeks. We were so bloody happy.
It’s difficult to put into words how you feel when the Sonographer say’s… “and there is your baby with a strong heartbeat fleeting away”. The scan looked more like 6 weeks than 7, but we were reassured that the baby would likely catch up, or the conception date could be a little out – did you know that sperm can travel for 7 days before fertilisation?
Fast forward to Christmas Day and I’m 9 weeks pregnant. I’m mainly surviving on:-
Orange ice lollies
Jamaican Ginger cake
Ginger beer (not ginger ale, ginger beer)
Raw carrots – in abundance.
Apples – but must be cut up
Bananas on rice cakes with a dash of honey
Plain boiled rice and soy sauce
Yoghurts with peach compote
Orange drinks – Fanta or Capri sun
Chewy sweets – Haribo, Randoms etc
I can only drive if I have original Tic Tac’s
Chips & curry
Chips & gravy
Chips with salt & vinegar
Salt and vinegar crisps – (preferably, Disco’s)
We also got to finally let our parents know we were with child. Which again, was another big relief. We spent the rest of the festive period SO relaxed. Which is just what I needed. This was mostly my view:-
Never spent so much time in bed, in my life. We decided ‘bed rest’ was for the best. This baby is so precious and I just didn’t want to overdo it by rushing about at my normal pace, lifting loads at will – up & down the stairs with laundry or the Dyson. I had also stopped cycling for fear of falling off etc. By week 11 I was just so tired, that being in bed was definitely the only place for me to be honest!
Also, is there a better way to spend your pregnant-life than in pyjama’s?! These ones are still my favourite, from NEXT. They also still fit, at the minute, hurrah!
Almost up to date now. We had our 12 dating week scan on Friday 18th January, again at our local hospital of Stepping Hill. I felt sick with nerves and worry and anxiety – what if there was nothing there like our last 12 week scan? I couldn’t speak. James and I spent the 10 minute car journey in silence, him asking if I was ok… then muttering “you’re scarily quiet… “.
As is rather usual, scans were running a little late, which is totally reasonable given the detail they require. I forbid anyone to get frustrated with this – even with a full bladder!
We were called into the scan room and soon as the sonographer addressed us I broke down in tears. She had asked a question about my previous pregnancy and what happened at my 12 week scan. To which I blubbered through the details of my miscarriage – she looked perplexed. Then we ‘clicked’ that she was in-fact referring to the issues that came up when we had the 12 week scan with Eli – his NT measurement was high, so we were referred to the Fetal Medicine Unit at University College London Hospital (UCLH) . Because of the sensitivity of time, the referral was organised for the very next day. The appointment at UCLH would include a detailed scan, counselling and the invasive Chronic Villus Sampling (CVS) procedure based on the results of the scan and our consent. CVS would be able to tell us if there were any genetic/chromosomal abnormalities.
Once we’d explained everything, I was asked to get myself comfortable on the bed. I couldn’t. I was on the verge of an anxiety attack, I felt like I was about to pass out. I was sobbing and shaking and sweating. I was so scared of being scanned. It seems ridiculous and all I could do was apologise. The worry I’d been bottling up the last 12 weeks had come to the surface. The constant anxiety at every niggle – the worry that my symptoms suppressing. Was I losing the baby? The constant anxiety of every, single, toilet visit – inspecting the tissue incase theres any trace of blood. Apologies if this is *too much information*, but I’m just giving an honest insight to the daily struggles.
Eventually, I came round and shakily got onto the bed. The warm gel was applied to my tummy and the Sonographer went to work. Within seconds (felt like YONKS) she showed us our babe on the screen. Firstly, I was so SHOCKED at how large the baba was. It never, ever, ever, becomes less amazing. I was sobbing again and clenching James’ hand so tightly. The relief of seeing that baby, an actual child, on the screen, is unbelievable. Secondly, the baba was bouncing about and flailing it’s arms so much – which was brilliant to see – but made it difficult for the Sonographer to get the measurements she needed.
The Sonographer managed to get the length measurements and gave us a due date of 27th July. The EXACT due date we were given with Eli. I mean, what are the odds of that?! The dates made my pregnancy 12 weeks & 6 days. A little further along than we thought!
The baby flipped the wrong way, then FELL ASLEEP, meaning the Sonographer couldn’t get the crucial NT measurement. She asked me to go for a walk and to drink some more cold water to try and get the baba moving about again.
So cold water was had and I waddled up and down this flight of stair no less than 50 times. We were called back in and I felt giddy this time – excited to get a second viewing of this wonderful babe. Except, the baby had moved into another awkward position. The Sonographer made me dance, tilted my body at odd angles, inserted a ‘soft play’ cushion under my knees and finally, made the bed go so far backwards I was slipped off, head first. Baby eventually played ball and it was confirmed that the NT measurement was low-risk, being 1.5m. Again, relief flooded my veins and I felt dizzy. (Although, that could have been due to the blood-rush from the bed being tipped up!).
So here I am. Week 14. Already with huge bump – yes there definitely is one in there – and feeling slightly less queasy, but still a lot tired.
By sharing this (ridic long) blog post, it has been cathartic for me and if it gives hope to those who have been through loss, then that would make me really happy too. A new pregnancy, does not replace the one you lost. To have a million worries is normal and expected. Just look after yourself Mama, because I certainly am!
“If you want the rainbow, you have to deal with the rain.”
― John Green, The Fault in Our Stars
OH HEY BABY! 🌿
It’s been nice carrying this wondrous little secret for the last 13 weeks & 1 day, but it felt even better seeing this 🌈 baba doing somersaults at our 12 week scan, last Friday! ✨
This isn’t the first scan we had during this pregnancy though. As this is a pregnancy after loss, I was given a scan at what we thought was 7-8 weeks. The measurements however tallied up to being more like 6 weeks, though a strong heartbeat could be seen. While this was a relief to see such a teeny, tiny flickering heart beat, I couldn’t stop feeling anxious that something wasn’t right. Was the baby not growing adequately? How could my dates not be right? We’d been doing Ovulation Tests as it took so much longer to conceive this time (I’ll be writing a post on this later). James tried to reassure me with lots of logical explanations for all of my worries. Then I went back into my pregnancy app (I use the FLO Heath app for Apple which iPhone Health) and realised that my dates were a week out, d’oh. And so the baby brain begins!
Can we just talk about the difference in the scans?! The 12 week scan dates this baby to be 12 weeks & 6 days. The first scan dates the baby to be around 6 weeks. So in 6 weeks, a whole baby has completely formed and I find it so extraordinary. To see the baby bouncing around in my tummy with two hands and two legs and a whole spine and ribs and heart and brain and NOSE. It’s just so magical and I don’t think I will ever get over how amazing a sight that is.
3 months have slowly gone by, filled with a heccuva lot of nausea (way worse than Eli), the biggest food aversions to everything, ever (way worse than Eli), tiredness (way worse than Eli), major anxiety (way worse than Eli) and my heart filled with an insane amount of hope (just like with Eli)💫
Our new little babe has the same due date we were given with Eli too – so that’s been LOLs😂
Eli is ridiculously excited to be a big brother – and has been looking after me like a proper little boss!🖤 Oh and @jameshill.tv is pretty made up too 🥰
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?!
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.
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 Hospital. Sign up here
15 October 7 – 7:30 pm Online Wave of Light Group Meditation Further information here
Parliamentary activity & events (invitation only)
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.
3 October: Event in Scottish Parliament
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
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 email@example.com, copying us in on firstname.lastname@example.org.
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 – Friday, 9 a.m – 4 p.m) or see our website for other ways we offer support.
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.
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%.
So here is a blog post that I never thought I’d be writing.
In fact, for the past 12 weeks I’ve been keeping a diary, a log, if you will, of pregnancy symptoms & the experience so far, the second time round. I was anticipating the publish of that blog post this week (I’d tied in lots of information about Pregnancy & Endometriosis). (After of course, we’d gone up North and surprised our families!).
Yes, you heard read right. I was pregnant. Kind of. No, I was definitely pregnant. Or at least my body thought I was… and had began the fruition of our second pregnancy. I had alllllllll the symptoms: extreme fatigue, nausea, sickness & diarrhea, runny nose, cough, lightheadedness, headaches, body aches, hot flushes, scattiness (god, the scattiness was insane), I’d gone up at least two cup sizes and had that lovely bright blue vein swooping across my left breast; just like I did with Eli. I had it all, in abundance. I was around 5/6 weeks when I finally got a positive pregnancy test result.
I’d had a big, scary, bright red bleed during our holiday last week in St. Ives. The first rule of Instagram? Don’t give the honest, real life view! Why would you ever do that?! Except, I really wanted to be honest. Believe me. To me, honesty is the best policy, I try to be as honest and real as possible across all social media – so here is what’s happened since.
I wanted to scream about how bloody marvellous it was to be pregnant. To be sat on the this beautiful beach, with my little bump! But the reality? I was indeed sat on the beach cradling my little baby bump, but it was upon a maternity pad, and I was silently crying while my boy’s went rock-pooling. I knew deep down that a bleed of this amount was bad news. I was 11 weeks. But I had a proper full-on baby-bump. I still had some symptoms going on. I was feeling pretty good! So, I spent the majority of our little ‘break’ Googling. Oh wonderful Google…
“Can you still have a baby after a bright red bleed?”
“Does a bright red bleed really mean miscarriage?”
“Symptoms of endometriosis during early pregnancy”
“Can endometriosis cause bleeding? 11 weeks pregnant”
“11 weeks pregnant symptoms”
“Symptoms of miscarriage”
“Baby moving or miscarriage?”
“What to expect miscarriage 11 weeks pregnant”
I read SO MANY positive outcomes across forums, blogs, in the press and via medical case studies. I’d almost convinced myself that it was fine. I was fine. The baby was fine. I’d had terrible cramps with Eli and spotting at around 6 weeks. In a lot of cases, women who experience bleeds in early pregnancy do go on to have a healthy baby. Heck, sometimes women bleed throughout the WHOLE pregnancy. Which I imagine is both frustrating and worrying in equal measure.
On Tuesday 5th September, Eli went back to school – as a big Year One boy. Super proud parents, we went from the school drop off to Broomfield Hospital for what would have been our 12 week scan. I’d felt a pang of excitement – the secrets we’d been harbouring for 12 weeks could finally come out. We could finally announce our bloody brilliant and exciting news, our darling boy was going to be a BIG BROTHER! (I’d even bought him a tee… did I jinx it?!). Doubtfully.
As we drove along that over-familiar route to Broomfield Hospital, I was getting closer to the feeling of doubt. My stomach was in knots and I felt lightheaded and sick.I definitely knew in my heart of hearts, this wasn’t meant to be. But that certainly does not deflect from the shock of having a Sonographer say “Are you sure your dates are correct as the sac measures 7 weeks, 1 day…. unfortunately this isn’t going to be a viable pregnancy I’m afraid”.
We’d had so much trouble with Eli during pregnancy, that anything I could do to help make this pregnancy ‘smoother’, I was doing. Including zero intimacy (hoping my Ma ain’t reading this!). I had my last alcoholic drink (I so need to do a review of non-alcoholic drinks, because we’ve had the best time trying so many out!) and caffeinated drink on my birthday, 1st June. I’ve not eaten anything you shouldn’t. I’d been taking Pregnacare for a few weeks even before that too. My dates were beyond correct. I would have been 12 weeks and 3 days pregnant.
With tears streaming down my face, I somehow managed “the baby has gone, hasn’t it?”. She then went on to confirm that I’d suffered an Anembryonic Pregnancy and showed us my full uterus with a very obviously empty sac. An Anembryonic Gestation (anembryonic pregnancy, blighted ovum, or empty sac) is a pregnancy in which the very early pregnancy appears normal on an ultrasound scan, but as the pregnancy progresses a visible embryo never develops or develops and is reabsorbed. How utterly batshit is that? REALLY? The cells of the embryo are “reabsorbed”. I still can’t fathom it. But I know it’s nothing that I could have possibly done or could have avoided. Medically speaking? It’s “one of those things”.
After being spoken to in the dreaded, ‘Quiet Room’, James & I were then transferred from the Antenatal Ultrasound department to an Early Pregnancy ward a few floors down. By the way, these ‘Quiet Rooms’, although decorated in a nice colour scheme and VERY clean, really do just look like 4 walls of bad news. Like, it felt like a funeral home, with a gushing waterfall print on one wall and a totally psychedelic bright mash up of randomness on the other wall. Obviously, boxes of tissues all around for good measure.
I felt numb. Surreal. Like I was in a bubble and was crying and felt an ache in my chest…. but couldn’t quite digest words. James was speaking but it was like a blurry mumble of nothing. Likewise, when we met with Liz, the Staff Nurse on the EPU ward, she was AMAZING – and went through every step of the process. Answered questions with ease. Was very knowledgable. Incredibly sympathetic and open and supportive. But what she actually spoke about, I have no idea. It’s like I wasn’t even there. An out of body experience? Maybe.
I was given 3 options and it was emphasised that I didn’t have to make a decision straight away:
Expectant management – wait for the tissue to pass naturally out of your womb.
Medical management – take medication that causes the tissue to pass out of your womb.
Surgical management – have the tissue surgically removed.
As I’m particularly phobic of hospitals following my labour with Eli, if I can avoid being near one, I will do my damned best! Without even a hint of consideration, I wanted to be at home, in my own bed and I’m keeping my fingers crossed this will all pass naturally. I’m so far, going through the Expectant Management route. I do have a lot of tissue build up and the empty sac to pass. I have been advised to expect a lot of blood loss, tissue loss, the sac and all accompanied by proper contractions. I was given the details of all emergency contacts should I lose too much blood or be in too much pain – if that’s the case, I’ll end up on the EPU ward.
I am currently losing a small amount of blood. WAY less than a normal period, so I don’t even know if this is the start. I hope it’s the start anyway. I just want this whole thing to be over with. I think I’ll feel relief then.
I have waves of feeling completely fine. Like none of this is even happening. Happy, even. But then I notice my tummy… and its soft and squidgy again. I have the “WHY ME?” and “WHAT DID I DO WRONG” scenario’s. Then I have the feelings of what it could have been. Us Mama’s have a very easy way of getting carried away – we have excellent imaginations. Too good even. We imagine the nursery. The feeding schedules. The cuddles. The bathtime routine. The newborn smell. The ooh’s and ahhh’s. ALLLLLLL the stuff we need to buy. (I’m all over that Sleepyhead Grand btw). Is it weird that I’m then grieving the loss of a baby… that didn’t actually exist? It’s like, the house was there, fully furnished, but there was nobody renting. I then feel all strange – how could I even have this intense amount of grief? The baby hadn’t formed. It was cells. Cells that were absorbed. How am I this upset and feeling so devastated? I guess it’s because it took us 5 years to get to this point. A point where I felt ready. I’d dreamed so many dreams about that baba-to-be and me. And us. And in between all this, I’m just in absolute awe of the human body – the female form. The things us women go through – its quite extraordinary. I mean, most of us can grow a baby in our tummy from nothingness (well, scientifically, no not nothingness, but you get me). And then when it doesn’t work, your body knows to expel it. It knows the drill. Just utterly bewildering and odd and funny and crazy and bloody brilliant – but also, so cruel. So although, in some ways, I feel like I’ve failed, I also know that my body is pretty epic too.
So to finish up, what has been quite a cathartic blog post, I have 2 weeks for my body to try and pass all that remains. I will have a scan on 19th September to see if the process is complete and we’ll take it from there. If it isn’t, then I guess I’ll have to have some kind of hospital management.
I want to give a shoutout to my darling James. It’s been a tough few days for him too. I know it is just as difficult a situation for a partner – I know he has felt just complete helplessness. I imagine he’s also quite scared about what can/could happen to me (he was told to monitor excess blood loss and symptoms of infection – we live 30 mins away from the hospital and in either case, he might need to call for an ambulance). I also know he is filled with sadness and grief too. This baby was tried for and very much wanted. We were both super excited. But him just being here, to hold my hand, means the world. (Thanks also, FEED family).
Have you been affected by Miscarriage? Please get in touch. I’d love to be able to speak to people now I’m able to. I just feel like I need to talk to others about their experiences and what happens and what doesn’t happen – because all I have in my mind is sheer horror. And even if it is as horrific as I’m imagining, I’m sure words of experience would be very comforting right now.
I’ve found a lot of useful practical information on The Miscarriage Association website – and also Tommy’s Baby Charity, who work tirelessly to obtain funding for the crucial research into pregnancy loss. I haven’t contacted either of them directly, yet, but just wanted to highlight their websites as theres a huge amount of information about the different types of miscarriage (I definitely didn’t know how many different types there are), also details about how to approach your work, how pregnancy loss affects your partner and a shed-load of additional research. Though, I am feeling overwhelmed with all this information, just glancing at paragraphs here and there is easy enough as and when I need to access it. I’ve also read so many stories that families affected by pregnancy loss have shared using the hashtags #SimplySay (The Miscarriage Association) and #misCOURAGE (Tommy’s).
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?
Wonderful news has emerged this afternoon, that the Duke and Duchess of Cambridge are expecting their first child. A right Royal Baba! Very exciting. I’m an avid fan of the Royal Family and I think this news is just lovely. Kate and William do look like such a nice couple – massive congratulations to them both!
According to BBC News, Kate is currently is currently “being treated in hospital suffering from hyperemesis gravidarum (morning sickness), which requires supplementary hydration and nutrients“.
The royal baby will be born third in line and in direct succession to the throne.
He or she will one day be head of the armed forces, supreme governor of the Church of England and subsequently head of state of 16 countries.