Edie_Rainbow_Baby

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.

Edie_Rainbow_Baby

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.

Edie_Rainbow_Baby

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.