Kingsbridge mum raises awareness of rare condition

Georgina Clarke’s son Noah, who is just about to turn 6 months old, has started helmet therapy for a severe Brachycephaly.

by Richard Harding, Dartmouth Chronicle UK 20 November 2021

According to the NHS website: “Babies sometimes develop a flattened head when they’re a few months old, usually as a result of them spending a lot of time lying on their back.

This is known as flat head syndrome, and there are two main types:

• Plagiocephaly – the head is flattened on one side, causing it to look asymmetrical; the ears may be misaligned and the head looks like a parallelogram when seen from above, sometimes the forehead and face may bulge a little on the flat side and
• Brachycephaly – the back of the head becomes flattened, causing the head to widen, and occasionally the forehead bulges out.

These problems are quite common, affecting around one in every five babies at some point.

In most cases they aren’t a major cause for concern, as they don’t have any effect on the brain and the head shape will often improve by itself over time.

Your baby won’t experience any pain or other symptoms, or any problems with their general development.

What causes plagiocephaly and brachycephaly?

The skull is made up of plates of bone that strengthen and join together as a child gets older.

A young baby’s skull is still relatively soft and can change shape if there’s constant pressure on a particular part of their head.

Reasons why this may happen include sleeping on their back – the back or side of a baby’s head can become flattened as a result of always sleeping on their back, but it’s important they do this to reduce the risk of sudden infant death syndrome (SIDS), problems in the womb —

• pressure can be placed on a baby’s head before it’s born if they’re a bit squashed in the womb or there’s a lack of amniotic fluid to cushion them
• being born prematurely – premature babies are more likely to develop a flattened head because their skull is softer when they’re born, and they may prefer to rest their head on 1 side at first as they’re not yet able to move their head themselves
• neck muscle tightness – this can prevent a baby turning their head a particular way, meaning 1 side of their head is placed under more pressure

Occasionally, a flattened head can be caused by the plates of the skull joining together too early. This is known as craniosynostosis.”

Here’s Georgina in her own words:

“I would like to help raise awareness of the now very common condition as the NHS do not help with it and see it as cosmetic only, which is far from the truth when your little one wouldn’t be able to learn to ride a bike as helmets wouldn’t fit etc. I had to find over £2,000 to fund the private treatment and we are travelling to Cardiff or Bristol every month for check-ups.

It would also be great for people in the local area to understand why they may see little ones wearing helmets as unfortunately we have already had some quite lengthy stares and people talking about us right in front of us. If you would be interested in chatting about it, that would be fantastic. The clinic owner would also be happy to help answer any questions.

I am a solo mother by choice. Noah was born in May via elective c-section. However, I passed a kidney stone the day before and Noah was born with excess fluid on his lungs so we were in the NiCU for 5 days during the pandemic. Noah struggled with feeding and through my own research I worked out he had a cows milk protein allergy (CMPA) and reflux. Feeding was very difficult for the first three months, we tried new formula, different medication for the reflux and eventually I tried some milk thickener from a friend and this helped instantly.

At around 6 weeks old, I noticed Noah had a little dent or ridge on the back of his head. After consulting with the GP, nurse and health visitor, I was simply told to ignore it, that it would go away in time and “pop back out.” No referrals to a physio or specialist were offered. Unfortunately, as I had to hold him upright for pretty much 24 hours a day, due to the severe reflux he had and choking risk if he lay down flat, the back of his head was in constant contact with my arm and as a result the ridge turned into a flattening and widening of his head on the sides and top (Brachycephaly). I asked the GP again and a consultant at the hospital but was told again to just ignore it.

I found myself feeling very unsupported and like my baby was broken and no one wanted to help but I turned my upset into determination and knew I had to find an answer to help my baby boy. After spending weeks researching, I discovered that the NHS only provide physiotherapy support and repositioning techniques (encouraging baby to lay on their sides instead of the back of the head) which were not offered to me by any of those I sought help from. They do not recommend or provide helmet therapy treatment as they see all types of flat head syndrome as a cosmetic only issue, and so our only option was to explore Helmet Therapy privately.

Knowing that helmet therapy is extremely common in America and other countries, I thought it must be safe and effective but still researched further to ensure it would work and Noah wouldn’t be affected negatively in any way. During my research, I found Lisa at Align Clinics UK and she immediately explained everything I needed to know, answered all of my questions and gave me a lot of advice. She looked at photographs and agreed that Noah’s case was serious. It took a little while to be 100% sure that this was the right decision for us and to also secure the finances as the treatment is in excess of £2,000 (plus travel costs).

We met with Lisa at her clinic in Cardiff and immediately felt in safe hands. She took measurements of Noah’s head and my worst fears were realised, if nothing changed he wouldn’t be able to wear a helmet to learn to ride a bike, career options would be limited as a lot of professions require some sort of hat or helmet (fireman, police officer, builder) or even wear normal glasses due to asymmetry of his ears. His case was off the scale of severity and he would need to wear the helmet 23 hours a day for 7-8 months to get the best possible result, with monthly visits to either the Cardiff or Bristol clinic for check ups.

We are now one week into treatment and although Noah doesn’t seem to notice the helmet, I am having to keep a very close eye on his temperature as it is like wearing a hat all of the time. You may see us out about with no socks on in the middle of winter!!

We have been out in Kingsbridge and most people have been lovely as he tends to smile at everyone, but we have had some quite rude stares and a bit of pointing when they think I am not looking. We would be more than happy to explain if anyone asked.

I would like to encourage any parent, carer or guardian to do their research and to contact Lisa at Align if they have any concerns. Also, push your GP or health visitor for a physiotherapy referral as Repositioning techniques can help if started early enough.

I completely understand that our NHS is already stretched but I find it terribly upsetting as a parent that they are failing to understand the long term affect this could have on a child, and as treatment is only successful if done under the age of 18 months then it really is a matter of now or never. I couldn’t face the thought of my little boy being picked on and having to make sacrifices or compromises over something that can so easily be fixed. I know he will be so grateful in the future and I am so thankful to those family and friends who have supported us.”

Clinical Specialist from Align Clinics Lisa Williams describes the special helmet of the type supplied to Noah: “Each helmet is custom made for each little one. I take a scan of the little one’s head, and prescribe modifications corresponding to the flattened areas to create the initial head mould. The helmet (The Boston Band) is then manufactured in the US and shipped over to me within two weeks.

The helmet is fitted by myself to the little one so the helmet gently holds exactly on the high points of the little one’s head shape. All of the little one’s growth is then channeled into the voided sections within the helmet and correct the head shape.

It is literally the reverse physics of how the flattening happens in the first instance. There is no ‘pushing’, ‘pulling’, or ‘forcing’ and it certainly does not give the little one any pain or discomfort.”

Brachycephaly is where the external force holds the growth at the back of the head. Instead of the brain and skull growing here, it grows where it is least resistant, which in the case of brachycephaly, is up and over the forehead, creating a wide, large forehead position. It also can flex out the temporal lobes each side just above the ears. So you can get lumps / bumps here, again broadening the head position.

A significantly severe head shape such as Noah’s is where the head shape is actually wider than it is long.

Although ‘only’ cosmetic this causes huge implications to the wearing of cycle helmets, horse riding helmets and glasses. It has also been pointed out to me by adults who actually have flat head syndrome that it can have an impact on their career as PPE hard hats do not fit them safely. So could have complications with any career which requires the use of a hat.

A lot of parents who come to see me are so so concerned about the mental health aspect of not treating flat head syndrome as they worry about their little ones being bullied later on in life.

With regards to little Noah, he is such a happy little baby who literally smiled all the way through his initial consultation, scan and helmet fit.

He started treatment at 5 months of age and as the optimum time for treatment is starting between 4-7 months (As this is when their growth spurts are the greatest) I would expect an amazing correction for him, to improve his head shape back to the normal range.

He has breezed through his weaning process and he could not have done any of this without his amazing Mum. She is a pretty incredible Lady.”

Source Dartmouth Chronicle UK