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.

Guest Post for Wriggly Rascals: Ligament pain during pregnancy.

 

When the lovely ladies from Wriggly Rascals approached me about doing this guest post I knew that it was something I could definitely discuss at length… I’d had ligament pain since the very early weeks of my pregnancy…

To read my full blog post, head over to www.wrigglyrascals.com and straight to Ligament Pain During Pregnancy ! Please do tell us all about your experiences with Ligament Pain during Pregnancy. What helped you out the most? How was your birth and recovery? Did you encounter the pain in subsequent pregnancies?

And don’t forget to sign up to the website to join the conversation!

MM.

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If you need any #pregnancy reassurance, ask @wrigglyrascals for help. www.wrigglyrascals.com

@wrigglyrascals is a new community to help #newmums, join in. www.wrigglyrascals.com
About Wriggly Rascals
Wriggly Rascals was set up by Shona Motherwell, a frustrated mum of twins Mhairi and Archie to get mums together to share pregnancy, baby and toddler advice via quick surveys to get the facts about what other mums do. Our mums pass on loads of great tips to mums who have asked for help. If you would like some advice, get in touch at www.wrigglyrascals.com

Hospital Update: Meeting the Consultant and measuring 34 weeks at 28 weeks.

My favourite image of our Baby Boy so far! Taken at 20 weeks, UCLH. 20th March 2012.

Yesterday morning we drove up to Broomfield Hospital for another appointment with our Consultant; to discuss the findings from our last scan –The Bilateral Talipes. But our actual consultant was stuck on the M25 (of course), so we saw someone else and had to go through the whole rigmarole of explaining everything that’s happened in this rollercoaster of a pregnancy!

Fast forward half an hour and I’m on the couch being measured up with a tape measure again. At my Midwife appointment, less than a week ago, my bump was measuring up at 30cm, so 30 weeks – Weekly Update: 28 weeks. So had expected it to be about the same.The two Doctors measured me again… I was measuring 34cm, so one would assume, 34 weeks! UH OH.

I was referred for an emergency scan to check out baby boy’s measurements properly, along with an index of my amniotic fluid. Had to sit around the hospital for 3 hours until the scan. MASSIVE YAWN.

Had the scan and everything was FINE. He’s measuring up at 29 weeks (of which I am 29 weeks tomorrow). He weighs about 2 and a half pounds. He couldn’t be more spot on measurements wise, he’s spot on all the ‘average measurement’ lines on the scan graph. Which is great!

Also, my amniotic fluid is showing up at 6cm at the deepest point, which again, is absolutely normal! So everything is great. I just have a lot of my own water retention and bloating..possibly because I drink far too much water. What can I say? I’m a thirsty girl!

Additionally, the Sonographer also said that we no longer need to go back to have a scan at 32 weeks. She’s more than happy with the progress of everything and doesn’t see why we should have to go back to the hospital to review baby boy’s Talipes. Which is also fine by us! We’re over the moon! But at the same time, I’m also a little bit sad that we won’t be seeing our baby boy for a little while… in fact, the next time we see him will be when he’s ARRIVED! Which to be honest, is also a little bit scary! It’s all very very very REAL now. EXCITED.

So the moral of this story is, don’t believe the measurements! It was never going to be an exact science, measuring your bump – who thought it would be?!

MM.

Hospital Update: Baby Boy bump has (mild) Bilateral Talipes.

Wednesday 18th April: Re-scan at UCLH, Fetal Medicine Unit.

This morning we visited the Fetal Medicine Unity in UCLH (University College London Hospital) for the re-scan of baby boy bump’s feet – to confirm or exclude Talipes (Club Foot). Since my worrying Midwife appointment the other week, I’ve thought about nothing other than the results we might find at the scan today. Not about his feet though, I was thinking about everything else that it could be linked to. Yesterday the panic set in again and I started googling all sorts, which we all know, is probably the worst thing you can do – ever! Based on the, err, google search findings, I’d really worried myself about how his spine might be developing, as Talipes can be the result of other genetic disorders. This all combined with the Midwife appointment made me really really quite anxious in that waiting from this morning.

Appointment was for 9am, we arrived early, as always, at 8:30am. We went into see the FMU and Speciality Doctor who has performed our most recent scans at UCLH, at about 9:15am. Our Speciality Doctor is beyond thorough, so started off with checking the progress of the brain and heart. Then he went on to check other internal organs for size and function, making the necessary measurements and notes as he went along. (See below for measurements from this scan!) He muttered that “everything is developing beautifully”. Then he turned to the back, looking at the spine and ribcage. He pondered over the spine and I clenched onto OH’s hand. The Doctor didn’t say anything so I asked “Is his spine ok?”. He smiled and said “Of course, he’s beautifully in proportion and developing as he should be. It’s a good thing!”. PHEW. I was happy at that point 🙂

As baby boy bump has proven at every single scan, he’s a wriggler. He moves non-stop. Which is amazing! But not great when the Doctor is trying to desperately get a good view of his feet! It was at this point that he got the 4D scanning images up again – which is just incredible. It’s so amazing to see your baby’s face like that – unbelievable to be honest! But he was really wanting to get a good view of his feet… so it was a quick look at his cute-as-a-button face and then back to business.

The Doctor scanned his feet for about 15 minutes using both the 4D and 2D imaging. He then turned to us and said that he was “convinced there is a degree of Bilateral Talipes. But is extremely mild”. He then went on to discuss corrective methods and said he’d like the Consultant to take a look. The Consultant arrived and said that the Talipes was so mild that “I probably would have missed it to be honest!”.

So with all this in mind, we’re over the moon. Couldn’t be happier. We always knew this baby boy of ours would be a character, and he’s certainly that!

We”ve now been discharged from UCLH and referred back to the care of Broomfield. We will have another scan (YES!) at 32 weeks to see the progression of the Talipes. This will be our 8th scan, although these scans have not been under happy circumstances (mostly), we’re extremely grateful that we’ve been lucky enough to see our baby boy growing at every single stage. As long as the Talipes has progressed as it should (or hopefully, not at all) then we’ll remain within the care of Broomfield. We will not be treated any differently for the birth, so there is no reason for me not to have the Water Birth I’m planning! Once baba is born, we’ll obviously review the extent of the Talipes and take it from there.

Measurements at 25 weeks and 5 days.

Biparietal Diameter (BPD): 67.9 mm

Head Circumference (HC): 243.9 mm

Abdominal Circumference (AC): 213.3 mm

Nuchal Fold Thickness (NT): 5.6 mm

Nasal Bone: 7.4 mm

Femur Length: 45.5 mm

Estimated Fetal Weight (BPD, HC, AC, FL) :842 g / 1 lb 14oz

4D scan of baby boy’s face. He has my nose and chin and OH’s eyes. He’s playing hide and seek here though unfortunately! 

MM.

Re-Scan: Echocardiogram and Anomaly Scan at 21+4 Weeks.

Tuesday 20th March: 4D scan! Fetal Heart Echo (Echocardiogram) and 20 Week Anomaly Scan at UCLH.

This Tuesday we went back to the Fetal Medicine Unit for a repeat Echocardiogram, doubled up with our 20 week Anomaly Scan. We are absolutely chuffed to say that every appears normal and all of baby boys organs are working correctly. So we will have no further review organ-wise, which is great news! The specialist was also (more than!) kind enough to surprise us with a few sneaky peaks at a 4D scan of our baby boy! It was absolutely incredible.

The extensive scan did however highlight that in some views there was a suspicion of Talipes (club foot). But in other views both feet appeared normal. The specialist also noted that the range of movements in all joints is normal. So this basically means that we have to go back to the FMU in about 4 weeks time to have a repeat scan to confirm or exclude the suspicion.

If it is found that one of his feet are a little on the wonky side, there are tons of things that can be done – without the need of surgery. So we’re happy.

Just also curious to find out if you had a baby with a suspected club foot and your experiences? What happened after the birth?

Here are some measurements and findings from the Anomaly scan that you might find useful. We were told these measurements were pretty much spot on for gestation, 21+4 weeks.

Biparietal Diameter (BPD): 52.4 mm

Head Circumference (HC): 189.1 mm

Abdominal Circumference (AC): 168.0 mm

Nuchal Fold Thickness (NT): 5.3 mm

Nasal Bone: 7.3 mm

Femur Length: 34.1 mm

Estimated Fetal Weight (BPD, HC, AC, FL): 416g / 15oz

MM.

 

CVS: The Fetal Echo (Echocardiogram) at 16 weeks.

Tuesday 14th February: Fetal Heart Echo (Echocardiogram), at UCLH.

Today we went back to the Fetal Medicine Unit in University College London Hospital (UCLH) for a specialist Heart scan. The scan was performed like any other normal ultra-sound scan, but was dedicated to looking closely at the heart; the way the blood flowed, the rate and a close look at the chambers of the heart. The sonographer will use colours on the monitor to look at the blood flow etc – so don’t be alarmed if you see lots of red and blue splats all over the screen! (This looks a bit like a heat map).

Look how much bigger he is! (Image above). All his organs are now well formed and his bones were all clearly visible. He was, again, moving all over! Such a lively little boy we have!

We’re very happy to say that everything looks on course here! The blood is flowing the correct way and he has a smashing heart rate. But we have to go back on 20th March just to have another look, when he’ll be much bigger; he’s still pretty tiny at the minute. But overall, no cause for concern! 😀

MM.

 

 

CVS: The Full Results.

Thursday 2nd February: The full results came back.

I had anxiously waited all week for that ‘BLOCKED’ number to call me again. It got to 4pm every day and I felt physically sick. I was shaky, dizzy and unable to concentrate at work. I was going to give it until Friday 3rd February at lunchtime, and then I was going to call UCLH to chase up the results. I couldn’t bear another weekend not knowing.

We got home from another tiring day at work, I felt withdrawn and exhausted and drained at the fact I hadn’t had that phone call, again.

There was a few pieces of post on the doormat… including one postmarked ‘London’, the address was handwritten. I just KNEW these were the results. I felt that pang of sickness and dizziness again.

We sat down together on the sofa as I struggled to open the envelope. I quickly glanced over the letter just looking for the words ‘normal’ and ‘positive’ and ‘clear’. The letter was a generic, photocopied letter.

But we saw the words we desperately wanted.

“We are writing to inform you that the results from your CVS demonstrate that your baby has a normal chromosome pattern“.

We were overjoyed! The letter was post-marked as 30th January, so the results took less than the two weeks to actually come back. Shame the hospital couldn’t call me to tell me directly – it would have saved a whole lot of agony. But still, we got the results we hoped for!

The letter also stated that we could call the FMU department to find out the sex of our baby. We we desperate to find out! So I called first thing the next day and they called back to tell me that we were having a LITTLE BABY BOY!! Absolutely ecstatic. We weren’t hoping for a boy or a girl specifically, but were beyond surprised to find out we’re having a boy! My partner is the last male on his families side, so we’ll be carrying his family name on – which is a wonderful bonus! We’re still in shock – but it’s so lovely to be able to bond with him properly now. Our little boy 🙂 Most people don’t get to find out the sex of their baby until the 20 week scan and even then, the scan isn’t 100% accurate! So we felt a little bit smug knowing that we’re having a boy, and that it 100% definitely is a boy! 😀

The next stage was an Echocardiogram (detailed Fetal heart scan) at 16 weeks – scheduled for Tuesday 14th February. Aptly, on Valentines Day.

MM.

CVS: The Rapid Result.

Wednesday 18th January: The Rapid Result came back.

I was laid on the sofa with the quilt, again, running through every single scenario possible. We were told that we’d get the rapid result back within 3 working days, and that an FMU midwife would call after 5pm. We anticipated that we’d get the phone call on Friday 20th January. My mobile started ringing at around 5pm. The number was ‘BLOCKED’. I knew it had to be them. I sat myself up and prepared myself.

The FMU midwife asked me to confirm my name and date of birth and then said the words we’d only hoped for, the results were NORMAL. That meant that there were no abnormalities with regards to Down Syndrome, Edwards Syndrome or Pateau Syndrome.

I rang my partner first and we both cried. I then rang my parents and close family – then my best friend. We all could breathe a sign of relief and relax, a little bit, until the final report came through…

This was the most agonising 2 week wait of our entire lives.

MM.

Referral to UCLH for the CVS procedure.

Tuesday 17th January 2012: Appointment at UCLH for detailed scan and CVS procedure.

With barely a wink of sleep between us, we arrived at the Fetal Medicine Unit at 9am for our 9:15am appointment. We were taken a for full scan which lasted around 45 minutes. There were two specialists and a FMU Midwife present, along with a student who was observing. The specialist doctor who was performing the scan said that there was a lack of nasal bone visibility, which also carried through as a ‘soft marker’.

We were taken into a family room where we could discuss our options… and we were then joined by an FMU Midwife who went through the basic pro’s and con’s of the procedure and the impending results that would follow.

I signed the consent forms and was taken back through to the specialist room where the procedure would take place.

The doctor and an additional Midwife scrubbed up and I was given two injections of local anaesthetic directly into my tummy, on the left hand side. The injections were the easy bit…

After around 5 minutes the anaesthetic had taken hold and the doctor proceeded to take the first of the placenta samples, while the FMU midwife constantly scanned my tummy. The procedure was uncomfortable and felt like tugging. I winced quite a fair bit and squeezed on my partners hand so tightly! I just kept looking at him and both he and all the staff present reassured me throughout. I felt in safe hands, with the best in the business!

The second biopsy was taken and I breathed a sigh of relief. The FMU midwife showed us our precious little babbit on the screen again to reassure us of his movements again.

I was then taken, slowly, into a recovery ward where one of the FMU midwife’s who had been present joined us to explain that that procedure had collected two successful samples that would be sent away asap. We were to get the ‘rapid result’ back within 3 days. The rapid result checks for Down Syndrome, Edwards Syndrome and Pateau Syndrome. The rest of the results would follow in around 3 weeks with a detailed report on rarer chromosomal abnormalities.

After recovering for a further 25 minutes or so, we were free to go home. My partner took me home and I tried to sleep on the sofa all day. I was exceptionally emotional and quite sore. I was advised that I may have period-type pains, some bleeding and soreness for a few days. I could not help but run over every single result and scenario in my head… and again, barely slept a wink that night.

MM.

 

MASSIVE catch up! The 12 week scan and what followed…

I can only apologise for not writing on this blog more frequently. But when you read my following posts (to come!) you’ll completely understand why it’s been a difficult couple of weeks.

I’m going to be magic and go back in time and catch up on EVERYTHING that has happened since the beginning of January. Circumstances have occurred since our 12 week scan that we hadn’t even read/heard about, nevermind had the time to contemplate. BUT, we’re through the other side now and, certain that everything will continue on the successful streak that we’re currently embarking on!

So let’s go back to the beginning then…

Monday 16th January 2012: 8:45am – The 12 Week Scan.

We eagerly waited to be called into the Scanning room  at Broomfield Hospital, Chelmsford, with a overly full bladder (ouch!). We were briefed by a Midwife regarding the 12 week optional screening… we had already agreed between us that we wanted to go ahead with the screening. The screening that day would include a blood test and further look at several measurements of our little babbit during the scan.

We were beyond surprised to see how big our little babbit was! He was so lively too – bouncing all over, waving and dancing!

During the scan the sonographer looks at the nuchal fold and gives a measurement based on the visible fluid.  Also known as the Nuchal Translucency measurement, this screening looks at the thickness of soft tissues at the nape of neck of the foetus. It was revealed that the Nuchal Translucency measurement for us, was on the cusp of the borderline between normal and ‘high’. The result measured at 3.5 mm. This is the actual borderline. We just couldn’t believe it. Albeit, it wasn’t as high as some peoples’ measurements that we’d heard of – some as high as 10 mm.

From then on, we were whisked off to a counselling room where another Midwife briefed us on our options.

We decided that we wanted further investigation and while I was having bloods taken, a referred to the Fetal Medicine Unit at University College London Hospital (UCLH) was set up . Because of the sensitivity of time, the referral was organised for the very next day. The appointment at UCLH would include a detailed scan, councelling 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.

 

Here is our precious little babbit – aged 12+3 weeks. Due date measured as 27th July 2012 – the day the Olympics begin!

We went straight back to work following the scan and revelations. I spoke to my boss, who was beyond understanding. He agreed to giving me the rest of the week off owing the invasive nature of CVS and the risks attached (2% risk of miscarrying).

Once we got home, we looked online to try and fathom what actually happens after CVS and other peoples’ experiences. We found lots of forum posts and blog posts on CVS and the procedure, but failed to find details on what happened post-CVS, the results and what it means. Hence, why these following blog posts are going to be a little bit more detailed than my usual posts. We just wanted to share our experience with everyone!

MM.