plagiocephaly

[Kirsty EW]

Fergus's plagiocephaly was regarded as one of the most severe sorts by the experts. Ours was caused inutero. I prematurely ruptured the amniotic membrane (ie waters broke) 6 wks before he was born so he didn't have the amniotic fluid filled sac to cushion him while in the womb from that point until birth. Without the sac his poor little body was squashed into my pelvis with the end result that his body and in particular his head was quite misshapen. Fortunately the rest of his body slipped back into place within a few weeks after birth. To compound the effects inutero, Gus was born 11wks prematurely. Being so premature meant his bones were soft and malleable so the effects of gravity seemed to compound the problem with the shape of his head while he was in the incubator etc for the first three months post birth.

Fergus's plagiocephaly was so bad by that time that we were advised it would not correct on its own and might not reach a "normal" (whatever that is!) shape even with the helmet.

Fergus started wearing the helmet at the beginning of March when he was 5 months corrected age (this would be his age if he had been born in October rather than prematurely in July. His actual age at that point was 8 months). He absolutely hated the helmet for the first couple of months and worked out how to take it off himself. It was a HUGE HUGE HUGE battle to get him to wear it. After lots of persistence and a very patient and talented orthotist who designed a chin strap to keep him from ripping the helmet off, Gus is now happily (yes happily!!) wearing it 22-23 hours a day. In fact he actually seems to prefer it on as it helps cushion the effect of the inevitable toddler tumbles and bumps into coffee tables etc.

We are now onto our third helmet (it needs to be recast as he outgrows each helmet). His head shape has changed dramatically in the 8 months since March. It still has quite a way to go. Fortunately his fontanelle is still open so there's still time/room for more skull movement. We have now been told that it will (hopefully) reach an acceptable (if not "perfect") shape prior to the fontanelle closing.

We got to choose from a range of patterns for the helmet. We chose one with cartoon pictures of animals (lion, panda etc). The exterior of the helmet is hard plastic and the interior made of different densities of foam. Where the skull needs to be pushed it is hard foam and there's soft foam where the flat spot is. As the skull plates shift in response to the pressure exerted by the helmet and natural skull growth the helmet needs adjustments. Sometimes we need to visit the orthotist a few times a week for adjustments and then there can be periods where not much seems to change for two or three weeks so there's not need for adjustments. I find the helmet needs adjusting when there are red whelts that don't fade quickly once the helmet is removed.

We weren't ablt get Fergus immediately wearing the helmet for long periods. We had to build Fergus's tolerance gradually. He now wears it 22-23 hours a day. I give him a break in the morning and the afternoon and occasionally in the middle of the day. One of the hardest things to manage is clothing changes. I'd advise stocking up on clothes that don't need to be put over the head for the early period when bubba's adjusting to wearing the helmet. As the less often I needed to take the helmet off for incidental reasons the easier Fergus seemed to be able to "forget" the helmet was on. In the early days he'd really fight me putting it back on. Was terribly hard to keep reminding myself that it was in his best interests to be wearing it. I wish in hindsight I'd been a little more forceful/assertive with Fegus in the early weeks as I think it took us longer than it needed to getting him "weaned" onto the helmet.

The helmet attracts a lot of attention but Gus seems to view it as positive attention. He is a very sociable little boy and having the helmet on seems to be an ice breaker for strangers. I think it's led him to expect everyone he meets to talk to him and smile at him. He's taking quite a while to catch up from his tough time inutero/premature birth and is still really small (ie 6.4kg at almost sixteen months!!). His smallness probably also accounts for a lot of the attention he attracts as he behaves appropriately for his age but looks like a MUCH younger baby.

The explanation I give curious strangers for the helmet is as follows. "He has a flat head. The helmet works to push the bones back into shape. The helmet is kind of like wearing braces for crooked teeth..."

I'd be happy to email you a photo of him wearing the helmet. If you'd like this, please me know which email addy to send it to.