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

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I have been looking, with interest, at some of the posts that have been published during the This Is My Child awareness campaign via Mumsnet. We live our life day-to-day as normal. Because THIS is our ‘normal’. Eli is our first born and we know no different. But I suppose, our story is different. I’ve not really highlighted Eli’s Talipes or (recently diagnosed) Benign Paroxysmal Torticollis on my blog before. I have mentioned in a few posts about his Talipes. But nothing in depth. So here it goes!

Everything stems back to when I was pregnant. I had a very tough first few weeks, after a bleed we were told that the pregnancy might not be viable at a 5 week early-pregnancy scan and told to return in 3 weeks time; where we saw the most amazing and incredibly tiny flickering – a heartbeat! PHEW!

We so looked forward to that 12 week scan. The sonographer was lovely, but seemed concerned. Eli was jumping ALL OVER, I thought she was just having difficulty measuring up dates because he wouldn’t keep still. She then turned the machines off and said she was sorry to tell us that our bundle of joy had a “nuchal fold measurement on the cusp of high”. The exact measurement was 3.5 mm. This was indeed the cusp before they offer you further investigation. We needed to know. We were informed that a high NT measurement could mean a multitude of conditions, including Down Syndrome. This was heartbreaking. This baby was so wanted – we needed to know what we were facing. We had ‘counselling’ and I had bloods taken. The nurse then called University College Hospital London and told us they had a referral for the the very next day. We were told we could have a more in-depth scan at the Fetal Medicine Unit; where we would also be offered the option of CVS – which would indeed confirm any anomalies, through a horrendously invasive procedure. After the lengthy scan with several specialists, we were advised that we could either go ahead with CVS there and then, or wait… It had been picked up that there was a lack of nasal bone; another marker for Down Syndrome. Our world shattered. HOW WOULD WE COPE?! We went ahead with the CVS there and then. It was like a whirlwind.

The procedure was horrible. Just horrible. I had soreness and tenderness for a few days after. Not to mention the constant worry and stress of the risk of miscarriage. It was a very very hard time for both of us, waiting for the results. 3 weeks passed and we received a letter confirming that everything was spot on with Eli. He didn’t have any of the common anomalies that CVS tests for.  We were over the moon to say the very least. PHEW!

But this was not the end of our hospital visits. To cut the (very!) long story short – we had a total of 9 scans. Because of the NT measurement, Eli’s heart, organs and growth was routinely monitored. He developed fantastically. At the 25 week scan, it was found our baby had a degree of Bilateral Talipes.  But it was “extremely mild”. PHEW! It was corrective. We were happy. In the grand scheme of things.

Fast forward to almost 42 weeks pregnant, I was just a HUGE pregnant ball; unable to move, pretty much. That little boy was so so squashed up inside my petite 5 ft nothing 1″ frame. I was eventually induced. Which, shock horror was just the WORST thing ever. (Incidentally, I would never recommend an induction. Just bloody wait till the baby wants to arrive!). After 30 hours of labour, Eli was pulled out of me in an emergency situation using Ventouse. He was out, safe, at long last. PHEW.

Or so we thought.

We both immediately looked at his feets. Yes, they turned in, but probably weren’t half as badly affected as we were imagining.

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Again, fast forward to 8 weeks old. We’d not been seen by a specialist. Not even had a referral. At Eli’s 8 week check the GP who was head of the surgery, told me that his feet would ‘correct themselves when he learns to walk’. I wasn’t happy with that. We’d been massaging, manipulating and exercising Eli’s feets since birth, but at about 8-10 weeks had hit that brick wall. They weren’t getting any better. With the encouragement from @BexandMic on Twitter, who’s beautiful son Hugo was also born with Talipes, I kicked off at the Health Visitor. I got a referral to see a Physio about his feet. At the very first appointment our lovely Physio, Jenny, pointed out that Eli’s head was tilted to the left. I couldn’t understand what she was referring to, he just couldn’t hold his head up yet… She explained it looked like he had something called Torticollis. Possibly from being so squashed up during pregnancy, possibly from the trauma of being pulled out so quickly. I was given exercises to do with his neck regularly, after a week, his head was straight! I still to this day can’t believe we didn’t notice it. Looking back at photos, his neck is completely to his shoulder on every single one. There was still tightness after a few sessions with the Physio and more manipulation on our part. We eventually saw our consultant, Mr Tuite at Broomfield Hospital on 31st October. Eli was almost 14 weeks old. Worryingly, most children with Talipes begin their treatment shortly after birth.

We were devastated when Mr Tuite said that Eli would in fact require plaster casts to begin the correction process. Mr Eli was pretty mobile at 14 weeks old! He was used to his bedtime routine and his bath. We knew the casts were for the best though. We had to do it. We were told Eli had really mild Talipes, again, so would require 2 weeks worth of casts…

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6 weeks later Eli was still in casts. It was incredibly tough.

Being the age Eli was, we got a lot of stares. You could just tell people must have thought he’d been dropped and had broken legs. When people asked what had happened, they didn’t understand. They made me feel like the story I was telling was a pack of lies. It was just a horrendous feeling. We did however have luck on our side, in the fact that it was Winter when Eli was in casts. It wasn’t hot, he would have been so much more uncomfortable if it was! He spent a lot of time in long socks and snow suits! In hindsight, I wish I’d been more confident with his casts. Embraced them more. Decorated them, even. The casts did not hinder Eli in any way, he was rolling over in them and they were SO heavy and awkward. He kicked his legs up and down and bashed the casts to bits! He was so brave – he didn’t sleep at night, but hey, he doesn’t now either!

The Torticollis would occur when Eli seemed to meet new milestones. It wasn’t constant. It was irregular. His neck tilted for around a week when he started rolling, sitting up and crawling. But also seemed to coincide with teething too. We continued to repeat the exercises and manipulations.

Mid-December 2012 and Eli went into Ponseti Boots and Bars 23 hours a day. He got an hour “free” where we gave him his bath and he had a kick about afterwards. This was a huge relief. We could get back to normality somewhat. We hadn’t even thought about the visual  impact the Boots and Bar contraption would have on other people. After our journey, we had just accepted what we had to go through.

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In the coming weeks, I had an array of comments and conversations about his B & B’s.

“They’re funky boots” “Thanks! They’re to straighten his feet” “ohh… I thought they were just fashion accessories! I’m so sorry. Didn’t realise your son was ill”. “He’s not ill?”

“Does he have broken legs?”

“Does he have broken hips?”

“Is that a contraption to stop him wriggling away from you?”

“Do they make him taller?” “WHAT?!”

 Etc. Etc. Etc.

We had a lot of nasty glances. A lot of nasty sniggers. I’m REALLY not thick-skinned at all. Like I say, I’d completely accepted that this was his treatment. It did not bother me. This was normal to us now – this was part of our every day lives! Until someone pointed his feet out, or made that eye contact, that’s when I’d think. Then it would upset me. But, I needed to get through that for him. It was in his very best interests. He wouldn’t be able to walk without it! Had we just been too blasé about the entire thing?!

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Eli wore his B & B’s for 23 hours a day, for 6 months. Most children wear them for 23 hours a day for just 3 months, then hours are dropped throughout the day until they eventually just wear them at night time. To our surprise, Eli went straight down to just nights at our next review. This was just insanely cool. It was just magical seeing him so free. His feet look PERFECT! We’re so so pleased. We’re also convinced though, that Eli struggles at night time because of his boots and bar. He’s free all day long, then come bedtime he’s confined. He can’t move with ease. It’s uncomfortable and heavy. He will sleep for 2-4 hours at a time. Then I will need to settle him. There has been nights where I have taken his bar or both his boots and bar off, and he’s slept soundly. I’m sacrificing my sleep so he can walk. Easy decision. I do worry it’s not good for him, the broken sleep. But what can I do?!

At 10 months, he started pulling himself up and cruising around his play pen. I can’t tell you how proud we both were. It was just so special; still is! SUPER PROUD PARENTS!

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Not long after Eli started standing up, there was an afternoon where Eli was particularly miserable. Anyone who knows Eli knows he is a jolly boy. Barely cries. He’s only ever grumpy in the night! He was super grizzly. I put it down to teething. Then he projectile vomited. His neck was tilted. He went floppy in my arms, the colour drained from usual his rosy cheeks, his eyes rolled back and he seemed to pass out. I was beside myself. Naturally. I rang my OH who calmed me down. I’ve never been so frightened, it was seriously scary. This had happened previously, but I wasn’t there. Another bout of sickness and drowsiness and I let Eli sleep. We then recalled another time when he projectile vomited (he was never a sicky baby so could recall these occasions clearly). Within in a few hours, his neck was back to its mid-line straight position. Without any manipulation. We worked out that they all coincided with his neck tilting. Could the Torticollis be causing this?

I took Eli to the doctors – who were, USELESS. He googled Torticollis and told me what Wikipedia says… He said he’d seen just one other case of this and to go back to the Physio if I was concerned. Hell yeah I was concerned. We didn’t know if it was underlining with something else. I went to Portugal for 4 days. Eli had another bout of the sickness and drowsiness with the Torticollis. Again, his neck had straightened up itself by the next morning. It was all definitely linked.

I went to the Physio again after my trip. She was lovely, she explained that the condition was Benign Paroxysmal Torticollis. This variation of Torticollis comes in waves, or ‘attacks’. The attacks can last anywhere from minutes, to hours, to days and is accompanied by vomiting, pallorataxia, agitation, infantile migraine, unsteadiness of gait upon learning to walk, general malaise and nystagmus. All sounded about right. The periods in which the child’s head is tilted and other symptoms appear can last anywhere from a few minutes to a few days, with a frequency of anywhere from two per year to two per month. Looking back at the frequency of the attacks, we’ve found they seem to happen at the beginning of the month – every month, so far. It seems to surround teething, more than milestones now.

So now we know.

But what to do about it. Well, we’ve been told my several doctors and the physio (as well as Google) that Benign Paroxysmal Torticollis is something that Eli will grow out of, probably by school age.

His most recent attack was on 6th August, his 1st birthday. His neck didn’t straighten up quickly this time though, it’s taken a good 10 days this time.

The additional care that Eli requires surrounds his Talipes and his Benign Paroxysmal Torticollis. We don’t know when he’ll be out of his boots and bar, could be at his next appointment (28th August), could be when he’s 3 or 4 or 5. We also worry about relapse; there’s also cases where the feet have been over-corrected so they point outwards. We also do not know when he will have another attack of Benign Paroxysmal Torticollis, or the severity. I have to carry dozens of muslins with me, just incase he projectile vomits. I often worry it’s just going to come out of nowhere. I also worry about when he goes to nursery – are there people who are going to be able to look after him if he has an attack? Luckily, at the minute, I can work from home. But he will need to go into nursery sooner rather than later, for him to be able to socialise with children his age, more than anything else.

We currently do not receive any help, support or funding. I do know of people who have been granted Disability Living Allowance for their children with Talipes.

I’d absolutely LOVE to hear from others who have experiences with Talipes or Benign Paroxysmal Torticollis. The latter being quite rare, so not heard or seen anyone else who has had a child with BPT.

Would we have had it any other way? Ideally, I’d love to have Eli without all the discomfort and challenges he’s faced – of course I would. But my goodness me, he’s a brave boy. He’s SUCH a character. And frankly, it’s made me and my OH better people. We’re stronger. We understand.

Worry, worry worry – isn’t that what all parents do?

MM.

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Mr Eli has Talipes…What happened next?

Just hours after Eli was born, 6th August 2012.

It’s just dawned on me that I have failed to write about Eli’s Talipes! I did blog about it when I was pregnant as it was found when I was having additional scans at UCLH, you can see the original post here: Hospital Update: Baby Boy bump has (mild) Bilateral Talipes. And I mentioned it in the 4 week update I did, here: An Eli Update: 4 Weeks Young. But I haven’t updated my blog with the developments since…

So from the top, it was found during an additional scan at UCLH that ‘baby boy bump’ had mild Bilateral Talipes. As the weeks progressed and I got bigger,  it meant that ‘baby boy bump’ got more and more squashed up inside me. This was the cause for Eli’s Talipes; it’s “positional” due to him literally being too big for me!

As you can see, from the first picture above (taken just a few hours after Eli was born), the Talipes looks really mild. But it turns out Eli was quite lethargic after my traumatic labour and birth. It wasn’t until he was home that we noticed how much he pulled his feet inwards (picture below).

This photo looks distorted, must have been a strange angle! Eli is 4 days old.

We were seen by a Paediatrician just before we left Broomfield Hospital and we were told that Eli would need his hips X-rayed and of course, Physio. I was told to expect both appointments within a few weeks.

After 3 weeks, I spoke to my Health Visitor who advised to wait one more week and then chase. I chased and chased and chased. I was pushed from pillar to post between departments. I couldn’t believe how badly organised everything was. (Hence why I haven’t actually written about this until now!). It was an absolute shambles. I finally received an appointment for Eli to have his hips scanned when he was 7 weeks old. During the scan I was told his hips were absolutely fine! (PHEW!) And again, that his feet were an isolated case due to him being so crammed in (Sorry boy).

I was STILL yet to receive an appointment for his Physio at this point. But as we have common sense, from birth, we had been massaging Eli’s feet ourselves with exercises we found on the internetz.

8 weeks old, after his first set of immunisations.

-You can see Eli’s left foot is much straight, but his right is still pulling inwards.

We saw a marked improvement with this – until about 9 weeks, when it just seemed to not get any better. It felt like we’d hit a brick wall. I finally had my appointment with the Physio when Eli turned 10 weeks. I’d like to point out at this is appalling. It took 10 weeks to finally see someone and the Physiotherapist, although absolutely lovely, gave me the exact same exercises to do. She said that it’s the muscles and tendons on the insides of both feet that are tight; causing Eli to pull his feet inwards. She suggested that Eli might need plaster casts, and in her opinion, it would only be for a week. I already had another appointment organised with a leading Talipes Consultant at Broomfield for when Eli was 12 weeks old. Again, this is terrible – we should have had Eli seen by a Consultant WAY BEFORE he got to 3 months old. I’m extremely unhappy about how long it’s taken and the awful communication, or lack thereof, between departments.

10 weeks old feets 🙂 

Last week we finally saw the Consultant at Broomfield. He looked at Eli’s legs, hips, spine, neck and feet. Which we didn’t expect, but was really reassuring. He agreed that Eli has Positional Talipes and has advised a course of plaster cast treatments. The casts will go from his foot and up his thigh – to avoid him kicking the pot off! When the Consultant left I spoke with the Senior Nurse (who organised our first appointment for THIS week). The Nurse advised that Eli will wear the casts for up to a fortnight at a time and will then need to wear special boots inbetween plaster cast treatment, the Consultant did not mention this, so I’ll see on Wednesday of this week what the definite course of treatment will actually entail. This sounds like Eli would be undergoing the Ponseti Method, but like I say, we’ll find out this week.

I am SO SO pleased that our beautiful baby boy is finally getting his little feets sorted out. Better late than never I suppose.

I’d like to hear from you. Has your little one undergone treatment for Talipes? What was your experience? Can you offer any advice or tips?

MM.

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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.

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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.

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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.