Chapter 5: From Severe to Moderate to Mild!

Jun 9, 2018Jun 9, 2018Rachel Black

It has been a while since we posted simply because life has just continued on as normal. Emilia wears her head band every day and it is a part of our daily lives. She honestly does not notice when it is on or off. When it is off she loves looking at it, poking her fingers through the little holes at the back and waving it around. Her progress has been fantastic! Initially her head shape was classified as severe with a cephalic index of 99.9% which meant her head was wider than it was longer. It went down to moderate and has now just entered the mild category which is what we are aiming for. We have been for a few scans and you can see the progress quite clearly. Her head has only grown 1mm in width but it has had 10mm growth in length which is perfect as we want length growth over width growth.

I was worried that the head band may slow down her development in regards to crawling with the added weight on her head but it hasn’t! She is almost 8 months now and is SO SO ready to start crawling… we just need to get her crawling forwards as she is a machine at crawling and shuffling backwards!! lol.

You can see from the break down of the results and scan pictures inserted below that Emilia’s face and head shape is becoming more symmetrical. She still has mild plagiocephaly on the left side of her head (it is slightly flatter on one side more than the other) so we still have a few more weeks to go to encourage the left side (Q4 in the scan) to even out with the right side (Q3)

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Here are her measurements and an explanation as to what each of the measurements mean because its all gibberish to me! The numbers in red are from her first scan and the numbers in blue are from her latest scan.

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Cephalic Ratio =Cranial Breadth / Cranial Length. An ideal ratio would be anywhere between 78% and 85%.

Radial Symmetry Index (RSI)= From the front of the head, 15° segments are measured and added. The addition of the right side segments is substracted to the addition of the left side segments. An ideal ratio would be left side – right side = 0
Oblique at 30 deg (US1 and US2) = Length of diagonal taken at 30° on each side (30° corresponds to the corner of the eye). The substraction of US1 and US2 gives an indication of the assymetry of the head.
Cranial Vault Asymmetry An assymetry bet. 0 and 10 mm is classified as mild, bet 10 and 16 mm medium and over 16mm severe.
Q1, Q2, Q3, Q4 volumes: Draws vertical and horizontal lines centered on middle point of head. Measures volume of each corner starting front left, then front right, back right and back left.
Anterior Symmetry Ratio: looks at front of head and divides front left volume with front right volume. An ideal ratio would be 1
Posterior Symmetry Ratio: looks at back of head and divides back right volume with back left volume. An ideal ration would be 1
Overall Symmetry Ratio: Divides left side with right side. An ideal ratio would be 1
Upper facial left and upper facial right: Measures the length between the centre of the front to each left and right ear. This corresponds to a cranial bone and determines the position of the ear.

We have our next appointment in 3 weeks time and we are hoping it is the last appointment. Ideally we would like her Cephalic Ratio to be anywhere between 89% and 91% so our fingers are crossed that we get closer to those numbers. If we do, it is goodbye head band and hello head kisses!

Chapter 4: Support, Stares and BIG Changes

Apr 4, 2018Apr 4, 2018Rachel Black

When I shared our blog last week I was very nervous about peoples comments and reactions. There have been a few stares while out and about (more on that in a bit) but I thought that if our blog had just a few views and if one of those views might help just one family or even educate someone about why children sometimes wear head bands then it would totally be worth it… but oh my goodness! The support from our family and friends was so overwhelmingly positive. THANK YOU. There were over 2500 views on our blog! We had some private messages from parents who were worried about their babies heads but did not know where to start and that this blog helped them take action. Sharing it was the right thing to do so thank you all for being supportive, non judgemental and loving.

Stares…

I am actually so used to seeing Emilia in her head band that I forget its on. It’s part of her cute face, chatty nature, cheeky smile and bubbly laugh. I only seem to remember it is on her when I am out and I can’t work out why someone is staring and pointing. It takes me a few seconds…Is there spilt milk down my top?! Baby food in my hair?! And then I remember, Ahhhh right… you are looking at Emilia’s head band.

On our first trip out there was a table of four behind us who could not stop turning around and looking, each taking their turn to look and comment as to why they thought she had a head band. I wish, looking back, that I had approached them and told them why she had it as they were VERY obvious about it all. A while later we were in another shop (buying even MORE clothes for Emilia – not that she needs any more) and the shop assistant approached us to ask us where he could buy one for his 1 year old who had just started walking so he could protect his head! I thought that was quite funny and sweet. I explained to him why she had one on but I was sure he could find a kiddie bicycle helmet for his little boy to wear if he was worried about him bumping his head.

On the flip side I have had some very supportive strangers come up to me and say “Ah my grandson had a helmet. He had great progress. How is she coping?” and other really lovely stories from strangers about friends or family members whose children have gone through a similar thing and had great results. More often than not we get comments on how cute she looks and she just gives people one of her big smiles and their hearts melt.

BIG CHANGES…

Oh.My.Goodness… Look at this progress! This is in just 2 and a half weeks. We tried a month of side sleeping and had very very little progress. Fast forward 2 and a half weeks with her head band on and there is SUCH a significant change. Her head is rounding out beautifully. Her doctor said he thinks that instead of the full 3- 4 months she will only need another 6 – 8 weeks with the progress she has already made.

We are just delighted! She has embraced her head band so well. We have another scan in 2 weeks time to compare the growth of her skull from her first original scan. Once we have these I will share them.

Anyway, we are off to the beach for a day of sunshine, sand and sea and that means a day of no head band! Have a happy day 🙂

Chapter 3: Week 1 – Adjusting to Life with a Helmet.

Mar 28, 2018Mar 29, 2018Rachel Black

We went on the 18th March to get Emilia’s head band officially fitted. She needs to wear it for 23 hours a day!!! Yes. 23! For the next 3-4 months… I was shocked when I first found this out but the longer it is worn, the quicker the correction and the less time is spent in the head band. There is a specific process for implementing the band.

Day 1: 1 hour on, 1 hour off. No sleeping with the band.

Day 2: 2 hours on, 1 hour off. No sleeping with the band,

Day 3: 4 hours on, 1 hour off. Naps only with the band.

Day 4: 8 hours on, 1 hour off. Nap and night time sleep.

Day 5: The Whole Shebang! 23 hours on, 1 hour off, day and night time sleep.

Exceptions: Temperature or sick – no band until temperature has gone. A heat rash or any rash- band is not used until it disappears and any red marks or abrasions on the skin, again no head band until healed.

Day 1 was actually ok. (Doesn’t she look utterly adorable in it??!!) I took the day off work to be at home with Emilia and help her adjust. My mum arrived for 10 days that day so having her there while I was at work during the rest of the week was wonderful. It eased the guilt a tiny bit and I knew she would have granny cuddles if she got upset. She was a trooper on Day 1. She moaned and groaned a bit but honestly she forgot it was on pretty quickly. Tummy time was a struggle as she had to learn to lift her head with some added weight but she has now mastered that..

b5f37072-72d7-45a7-9713-eec10ac68b60 — Tummy Time!

B420CBA8-CF9F-48C2-90B3-86B8647E3F8C 4 — Happily singing away.

Day 2 was fine but Day 3 was a struggle to get her to nap with the band. She basically did not nap THE.WHOLE.DAY... Needless to say she was in bed, cranky and overtired, as soon as her bath was finished that night.

Day 4 she napped and slept at night with it. We were worried it would affect her night sleep (we are very blessed with a relatively good night sleeper) but she did her normal 7pm – 7am sleep with a dream feed in between.

Day 5 she had a heat rash! Noooooo… it was all going so well. The great thing about our doctor is he sets up a WhatsApp support group for his helmet / head band patients with 3 other specialists in the group. I immediately sent a photo and one of the specialists responded saying she must not wear the band for the next 24 hours and to come in to get the head band adjusted.

We went in the next day and they drilled some holes in the back to allow extra ventilation. This made a world of difference. Her head was no longer sweaty when the band was removed for the hour before bath time. Success!

The band needs to be thoroughly washed every day as well as Emilia’s head with a special shampoo. (The band is already starting to smell like a stinky sock but this is a very common thing for these bands)

I do miss being able to kiss the back of her head whenever I want or kiss her cheeks without being bashed in the head myself with her helmet! When the helmet comes off for the 1 hour a day, she is showered with kisses all over her head, face and especially her chubby gorgeous cheeks!

All in all week 1 was far easier than I thought and as my friend (who has been a great support and whose son also needed a head band) said to me “It’s harder on you, the parents, than it is on her. She won’t even notice” and she barely did…

Chapter 2: An Inkling, A Diagnosis and Mum Guilt…

Mar 28, 2018Mar 31, 2018Rachel Black

We decided from birth to have Emilia sleep on her back as we felt it was the safest way for babies to sleep and it was recommended in every baby class we went to, midwifes and nurses at the hospital, baby books and websites. I was aware of plagiocephaly (flat on one side) before Emilia was born and was certain, as most new mums are, that this would not happen to us. I would watch out for it and know what to do to prevent it.

Because babies skulls are so soft and pliable they still develop once they are born and any external pressure can cause changes to the growth of the skull – like sleeping on their backs. When Emilia was 2 months old we noticed a very very slight flat spot on the right side of her head. (She had a preference for this side and I tried my best to keep repositioning her) We mentioned our concerns to our paediatrician who assured us it would round out once she spent less time on her back and started sitting and crawling. She said we should increase tummy time which we did. That being said, Emilia was never on her back when awake. From the beginning she wanted to be upright, looking around and wanted to see EVERYTHING. The only time she was on her back or had pressure on her head was when she was sleeping or during nappy changes.

When Emilia reached 3 months her flat spot hadn’t rounded out but it wasn’t worse either. It was the same so we moved her to her own room and her crib at this time. This is when I believe her mild plagiocephaly turned into brachycephaly. From month 3 to month 4 her head became almost completely flat on the back due to sleeping on her back in her crib. Even with turning her head from side to side she always went back to sleeping face up. Again, I mentioned my concern to our paediatrician who again said it was nothing to worry about. I ordered a craniometer https://mimosbabypillow.com/pages/craniometer to measure Emilia’s head. Her measurements confirmed what I thought – that she had brachycephaly. Her head was wider than it was longer and it had a cephalic index of 102. Babies should be around 85. (To work out the cephalic or cranial index you take the width measurement divided by the length and x 100. (CW/CL x 100)

I was no longer happy to just ‘wait and see’ considering she was never on her back when awake. We booked an appointment with a specialist who did a scan. He confirmed our suspicions. She indeed had brachycephaly with mild plagiocephaly. You can see from the scan that her head is wider than longer. He said that he wanted to give her one month to see how her head is growing and at 5 months if it is not rounding out naturally he wanted to give her a head band (or helmet as they are sometimes called)

This is a scan of Emilia’s head. You can see it is almost flat at the back. I have also inserted two pictures that show the difference between brachycephaly and normocephaly.

Cue: Mum guilt and uncontrollable tears….

One of the things that upset me the most was that she was born with a perfectly rounded head and because we chose for her to sleep on her back because we believed (and still do) that it is the safest way for babies to sleep, we caused her head to be flat. How did I let this happen, how was I not ‘The Perfect Mum’ ?!

For the next month we did side sleeping in the daytime and side sleeping until her dream feed when she was observed on a monitor but it made little to no difference. At 5 months we went back and had another scan. Her head was not rounding out and it continued to grow wider. Our fabulous doctor, Dr. Charl from Cape Town (which was comforting as living in Dubai it is always nice to have a fellow ‘Saffa’ make you feel at home) scanned her head and sent off the measurements and her head band was made.

Chapter 1: Our Journey

Mar 28, 2018Mar 29, 2018Rachel Black

Our daughter, Emilia, was diagnosed with Brachycephaly at 4 months old. When she turned 5 months old we chose to go ahead with the option of a head band. This was a tough decision we made as a family but after a lot of research and repositioning techniques we knew in our gut that this is the best choice for her. This is our journey, and more importantly, Emilia’s journey adjusting to life with a head band (helmet).

Why blog about it? We decided to blog about it because when we found out she had brachycephaly there weren’t many personal blogs or stories about it that we could relate to or if there were, they were from quite a few years ago and didn’t really show the journey rather just before and after pictures. We were overwhelmed and thought if we are feeling this way then possibly other mums and dads may feel the same way too. Maybe they could read this blog and follow our journey to see that it is ok, it will be fine and yes there are a few bumps along the way but then again, what is life without a few bumpy roads?