I feel like crying - Plagiocephaly (not a major disability, I know...) - need support

[Sal1105]

Hello - I'm trying to find some support for parents of children with plagiocephaly. I can't find many so I thought I'd try here. My two year had quite severe plagio and I was orginally told by my HV that his hair would cover it up and no-one mentioned a helment. We eventually got his looked at at 7 months and he had assymetry of 18mm. He wore the helmet for 3 months and it got down to 7mm and when it stopped improving we took it off. My problem is that I still see it every time (and I mean every time) I look at him. It upsets me so much that sometimes I can't look at him. Don't get me wrong, no-one else seems to notice. It's just me. I have a natural thing about straightness, things being lined up and symetrical so this is a real struggle for me. I feel guilty and angry that I could have done something earlier. I feel that it is stopping me from bonding with him. I feel shallow that I can't see past it. When I was trying to get pregnant, all I could see were pregnant women everywhere. You know when you split up with a boyfriend, all you can see are happy couples everywhere. Well all I can see is small little boys with perfect heads. I'm beating myself up about this. I was thinking may be I could get hypnotised to stop myself seeing it. I feel so awful about how I feel and it's affecting how I feel about him. He was a difficult baby in terms of colic/sleep etc and now this. I'm having real trouble bonding. Are there any other plagio mothers out there who can offer support. I'm getting desperate. It's doesn't help that I have a perfectly lovely symetrical 3 year old. I don't want to feel more for one than the other......

I never got ds diagnosed with plagiocepaly but he had an astonishingly flat head, and ikwym about seeing perfect occipital buns everywhere.
If it helps, ds's head rounded out quite a lot between age 1 and 3, and now at 6 you would never know that it was ever anything other than normal.
(There's quite a lot of variation in adult head shape too, and dh and I both have flattish heads - I don't know why!)
I'd suggest going to your gp and saying it is upsetting you, and seeing what he/she says. A helmet is still possible, isn't it?

Sorry, what a twit, I've just reread your post.
I'd say there is still time for it to round out more - ds's certainly did.

THat's ME that's the twit, btw

Hello - thanks for your support. Most helmet places say there's no point after 2 years old as the head bits fuse at about 18 months. Plus they're £2,000 a pop, so no more helmet! I can only hope that it will improve but I know that it will never be symetrical. He could do with some more hair which would help....

You're not a twit. It was a bit of a ramble!

My friends ds had plagiocephaly when he was born. He's now 4 and just started school. You'd never know he ever had a problem. He looks perfectly normal.

have you looked here

Sal, I have a perfectly lovely UNsymetrical DS - not plagio, but a leg condition.

This doesn't sound as if it is specific to the condition your DS has, but around your reactions and anxieties. He IS perfect, as he is! But somehow guilt or worry has become a barrier for you. Maybe your feelings of guilt or worry have made you feel afraid to get too close to him?
But you rally shouldn't feel guilty - we can influence certain things but control nothing about how our babies develop. I worried for ages that I had caused DS's condition, specifically a scare stiry that did the rounds in the press about drinking water that had been frozen inside plastic bottles (something I used to do on holiday all the time). Then I found out that the story was rubbish - AND our consultant said to me "at conception and as the embryo grows there are millions and millions of cell divisions taking place. Occasionally one goes a little bit wrong - nothing can stop that occasionally in such a complex process"

How would you react if it wasn't 'just you' - if someone else looked at him and said 'eeergh, he's not symetrical, how awful!'? if someone said that about my DS I would launch myself at them like a tiger with my claws fully extended, and I bet you would want to defend your lovely boy, too.

I don't know anything about hypnotism etc, but why not ask your GP about some counselling?

DS has plagiocepaly, he was prem though so its almost guaranteed at least to start with. Its been diagnosed, I can see it if I really really really look for it. On the other hand I see lots of other babies who haven't been diagnosed who have much more severe and noticeable plagiocepaly, but those babies were term, the mothers aren't in the medical system and they haven't been told or worried about what to do. I spend half my life trying to move DS head onto his left side. the other half I look at him and think, well his head is on his left side what are they talking about.

I am not trying to belittle your feelings, I think it would be good for you to talk to someone about it, and about how you feel. You clearly had a tough time of it, and I am sure talking it through would help. I know with DS I often have irrational moments when I think if only, if only. (usually if only I had managed to stay pregnant longer) But it just wasn't to be. Your DS wasn't to be an easy baby, sleeper etc and that will have taken a toll. I find that if I stop thinking if only, and stop trying to compare him (to term babies in my case) I am happier. DS plagocepaly is the least of my concerns with DS. I don't see it, and I don't love him less as a result. I worry myself sick about other things though and always always go back to thinking there was nothing I could do. I can't turn the clock back, and he is what he is. In the end all I really want is for him to be comparitively healthy, and what's inside his head to be ok.

Thank you thank you thank you. I do need a good slap. I try to think how lucky I am to have two healthy, normal children and not have something more serious. I know I sound like a wingy ungrateful so and so. Some days are worse than others (today being one of the worse ones....). I will talk to my GP and some counselling wouldn't go amis. Thank you again.

I don't think you need a slap at all!
I think you need some support, some sympathy, some talking with people who have been through that cycle of guilt and fear, and some help to understand your own reactions.

Actually, it was very courageous to acknowledge how you feel and to look for some perspective and other views.

I have to say I agree with Blu. I also think you need to be kind to youself, rather than to think you need a slap

Don't be so hard on yourself, you are intimately aware of your child, other people probably will not notice. Especially once your DC has a full head of hair.
My DSD has plagiocephaly - the back of her head was practically straight across caused by being left first flat on her back for most of the day and then in a car seat by her DM.
When she was smaller about age 3 or 4 it was noticeable but now at 7, her hair covers it very well and people don't notice and it has improved and rounded slightly.
She is oblivious as we have never made a thing of it and we have never pointed out the difference - what we do do is celebrate that we are all different and unique and special in our own ways.

Oh, you're all so flipping lovely on here. Thank you so much for all your support. I am hoping his head will round out a bit, and yes, more hair would help. I have some very bad days with it and often it's a build up of my own guilt etc, that I need to let out. Unfortunately it's usually my DH who bears the brunt. Poor man. I think he's run out of things to say. He has a very different perspective to me. Men are so simple aren't they? I mean that in a good way - not that they're all thick. Which they are.....

What are you feeling guilty for exactly.... Maybe you could have done something earlier, maybe it would have made a difference, but you said yourself you took the helmet off when it stopped making a difference. And you did the best you could based on what you knew at the time, and what your HV said at the time. And you loved your son. I am sure that he won't feel you let him down. He's a boy, who'll turn into a man and will probably have a different perspective too

It's not a major disability, but it's hard. My son Aaron was diagnosed with it and he finished his STARband treatment for plagiocephaly not so long ago. But I remember how hard it was, and panicing and anxiety is inevitable. Although I went with the STARband treatment, it is common for plagiocephaly to cure in time. I'm sure you'll be fine :)

If you are interested in plagiocephaly treatment, I used the Steeper Clinic. If you're interested, here's there website.

www.steeperclinic.com

Hi

My daughter was born via ventouse at 33 weeks due to IUGR and my pre-eclampsia. The ventouse cup wasn't on straight and her neck muscles were torn during birth which led to plagio on the left side - she's now 7 1/2 and although her head is still flattened to one side I am the only one that notices! I do think as they get bigger their hair gets thicker and hides it well and I'm sure this will happen to your ds too.

It is very traumatic when they are little - dd needed extensive physio to help her neck muscles heal - so I do empathise.

The only thing I suspect is a longer term implication is the fact that she can't lift her head up out of the water when swimming - but that has never been medically confirmed as a result of her injuries.

Another one here! DD is 5 months and I've been assured 'it won't get any worse, and will be unnoticeable'. Good to hear this is the case for most people! Would just feel so awful if we didn't treat it, and it didn't right itself.
Not sure why she has hers - but her daddy does too so I blame him maybe it's genetic. She does spend a lot of time on her back, but I make an effort with tummytime and all that. Luckily she has a lot of hair!

Hi Sal1105.
Your post is ten years old and we don’t know each other but you couldn’t have expressed my current state of mind better. Except that I am I’m guilt over the shape of my firstborn’s head. I feel like a terrible mother when I compare his head to that of my infants. I let my son down. I wanted to know if your sons head got better over time ? At some point we’re you able to move on? And does it bother him now ? Looking for some hope!