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?