Problems with temperature

Alanek1

Day 9.

Night without the helmet due to temperature rise.

Day 11.

Another night without the helmet. LO was moody in the afternoon and had difficulty with taking his late nap. When I took the helmet off in the evening I found out why he wasn’t a happy bunny. His all head was red! After a bath me and my husband covered it with sudocrem and was trying to put him to sleep, which took about an hour as he was very unsettled but finally fell asleep on my lap.

Day 12.

In the morning I contacted our clinician, because I started worrying about the redness on my baby’s head. It turned out that he must have been too hot while wearing the helmet. As advised we left it off for another day and night.

Some days it is really difficult to keep him cool while the temperature changes and when he is so active.

Day 13.

My little boy felt a lot better, all redness nearly disappeared, but again no helmet during the day. We put it back for the night which went quite all right.

Day 7.

7

We had an appointment at paediatric clinic to check my baby boy’s hips. I was wondering what would be the doctor’s reaction on the helmet. She mentioned  it straight away, asked which clinic we went to see and to my surprise commented that what we did was the right thing. Then we were discussing GP’s approach to flat head syndrome which we agreed to be negligent. It was really nice to meet NHS doctor who took the problem with the shape of our little one’s head seriously.

During the visit at the clinic I also learnt that the flat spots might also indicate some issues with babies’ mobility development. For example (I hope that I explain it correctly), if a baby has her favourite side she turns her head to then she may also use only one side of the body to move or reach things which results in the underdevelopment of the opposite side. So, in my opinion, this should be taken into consideration by GP’s when parents mention the strange head shape of their babies to them instead of being told that this will sort itself out over time.

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Day 4.

We took our LO shopping with the helmet on and I was wondering if anybody would notice that he was wearing it.
People did stare and I felt a little annoyed by this, but soon ignored it.

First night with the helmet on went all right. There was nothing unusual during that night, he woke up couple of times as he normally did, but quickly went off. I was so proud of my brave baby.

Day 5.

I realised that I didn’t pay any attention to people’s stares, because I forgot that my baby had a helmet on! It’s amazing how quickly I got used to new circumstance and started considering it as something normal.

The same is with my little boy who seemed to treat the helmet as another piece of clothing that he needed to wear every day and night.

Day 6.

Something funny happened today. I went to a shop and when I was coming near to the till, a women behind the counter looked at my LO and complimented on his hat. Then I took the hood off his head and told her that it wasn’t a hat but a special helmet he needed to wear. She went: Oh! And added that he looked so cute in it.

Worry should be my second name

The day before we were going to pick up the cranial helmet I was full of doubts. Even thought me and my husband made a decision to start the treatment there was still lots of question to ask. Was it really necessary? Would wearing it hurt him? How was he going to play or sleep in it? Did we do the right thing? What would my family’s and friend’s reaction be?
I had read so many articles for and against the treatment that my head felt like exploding. But I decided to follow my instinct. Seeing and talking to parents of children who had already started wearing helmets also helped a lot, as then I learned that it is not as bad as I expected it to be. And most importantly, I stopped thinking that my child is the only one who needed this therapy. But I had a feeling that he would be the only one wearing the helmet in the place where I lived. And I think I was right.

* * *

Day 1.
The little one wasn’t  pleased when the helmet was put on his head. I expected that, as he was never very keen on wearing hats. Seeing the grimace on his face I felt so sorry for him, because I thought that it hurt him. On our way back I had second thoughts about our decision. I felt even worse when later during the day I took or rather was clumsily trying to take the helmet off my baby’s head and he didn’t like it.

Day 2.
I was getting better in putting on and taking off the helmet, but my baby boy was still not happy when I started to alter it on his head. Luckily, when it was on, he didn’t seem bothered at all, which for me was crucial.

My friend came to visit me that day and because I hadn’t mentioned to her that my little boy was undergoing the helmet therapy I felt a little concerned about her reaction. I was prepared for her to be judgemental; I thought that because I kept blaming myself for my baby’s head shape, so I assumed that everyone would be critical towards me . But it was quite opposite. She noticed the helmet straight away and we started talking about it like it was something we had already discussed before. She was very supportive, which was so uplifting.

Day 3.
My little boy had no problem falling asleep with the helmet during the day and at night time. After putting him to sleep at around 8 pm, he woke up at 11 pm, so I took the helmet off and he fell asleep again. So really I shouldn’t have to worry so much. Today was a really good day.

First appointment

Once we chose the best, in our opinion, clinic, we made an appointment. It turned out that our baby developed not only severe brachycephaly, but also plagiocephaly, which meant the flattening at the back and the bulging on the right side of his skull.
We were determined to start the treatment straight away, but unfortunately the manufacturing site was closed during Christmas and in addition, the clinician who took all the measurements was planning to go on holiday, so the next appointment was to be in the middle of January. Which meant another month for our baby before he could start wearing a helmet.
But then, I though, maybe there would be some improvement during the following month? No, there wasn’t.
At the next appointment we found out that the head had grown a bit, but its shape stayed the same. This convinced us even more that our little baby needed the therapy, which he was to start in two weeks time.

Making a decision

After I had noticed that my baby boy had a flat head, I mentioned it to GP and was told that there are many children with their head flattened and that it would even out over time. This, of course, wasn’t enough for me and I started reading about this kind of deformities. I learned that my baby developed a condition called brachycephaly. I read more and more about it and also found out that infant’s head grew most for the first 6 months and then the growth slowed down, so to make the shape of my baby’s skull better I didn’t have much time.
I decided to act.
Firstly, I bought a special pillow to treat a flat head syndrome. Secondly, I watched my baby during the night and made sure that his head is turned in the right direction, as the flatness was worse on one side. Also, most of the time when he was up I put him on his tummy. And when he was on his back I used the pillow – in the push chair, in the cot and during playing. So the ‘head support’ was constantly on the move. Some people could take me for a loony, if they saw me running around the house in one hand holding my baby, in another one the pillow!
After a month I saw a slight improvement, but for me it wasn’t enough. The head was still flat.
In the meantime I did a lot of reading, especially comments from parents who had the same problem. And then I run across a helmet therapy, which seemed to be the only solution to make the problem go away. After talking to my husband and getting to know all pros and cons we both decided to go for it. It was a hard decision to make, especially after hearing the doctors sayings that this would sort itself out.
But I didn’t want to be one of those parents who regretted not having done that when they could have.

 G U I L T

 When I first noticed that there was something wrong with a shape of my little baby’s head he was nearly five months old. Even though I decided to do something about it, I could not get one sentence out of my mind ‘It’s my fault’. I blamed myself for not noticing it earlier, for not paying enough attention to my baby’s head position when he was asleep, for not putting him on his tummy often enough, for not knowing that his head might develop a flat spot.

And then I asked myself a question – “Why didn’t I know?”. I had read so many articles, booklets, leaflets about pregnancy and caring for a newborn and not once did I run across information about flat head syndrome. There was a lot of advice regarding how to position a baby to sleep due to sudden infant death syndrome, but there was nothing about the fact that when a baby is lying on her back for the most of the time her skull might deform so she should be on her tummy as often as possible when awake. The only thing I remember is seeing a short film on You Tube where a midwife was explaining that tummy time is important for neck muscle development, but nothing about head. Which I found astonishing due to the fact that problems with muscle development might as well lead to head deformities.

The same story at antenatal classes and even during midwife visits. No information about flat spots whatsoever.

Funny enough when I visited NHS website and searched for flat head syndrome, I could learn about two types of ‘moulding’- plagiocephaly and brachycephaly, what they were and how to prevent them. The problem was that I found this information AFTER my baby developed this condition.

So my next question is – “If NHS does not fund the treatment, why they do not inform parents-to-be about the importance of tummy time in relation to head shape, so that parents know this before it happens and most importantly prevent this to happen to their babies.”

AWARNESS – this is all we need.