When a Bent Head is More than Plagiocephaly

Steph’s recent post on tummy-time mentions the increasing incidence of plagiocephaly – literally, a misshapen skull. One reason for the rise is certainly the increased numbers of babies sleeping on their back, which is recommended as being the safest way for babies to sleep, avoiding SIDS.

However, there are other causes of plagiocephaly, including craniosynostosis, which is caused by the premature fusion of sutures (joins) in the skull plates. This was our experience with our second born…

I wanted to share our experience on the off-chance it may be meaningful to another family. The incidence of craniosynostosis in Australia is about 1 in 2500 births. Our surgeon has told us that the majority of cases have no known cause (although some do have associated syndromes, our son did not), and that the fusion occurs during the second trimester of pregnancy. I should point out that I am a mum with no medical background.

Billy around 5 mos; before diagnosisWe noticed the shape of our son’s head as being β€˜different’ within hours of his birth. Initially, I was told it was swelling from moulding during labour; but basically, from the day he was born, he looked slightly asymmetrical. Not unattractive but just a bit skewed. Some days it was more pronounced than other days, and looking at photos, it always seemed more noticeable. He had one eye which looked more swollen/closed than the other, and as the months progressed, his face really started to contort to a C shape. I have been told that you will see it a lot more clearly in a mirror or in photos.

Over the first 6 months of his life, I asked questions of my midwife, saw a cranial osteopath, and spoke to other parents. It wasn’t until he was 6 months old and three people commented on his noggin within a week that I really pushed my GP for a paediatricians referral. I waited a couple of weeks for a paeds appointment and I went to see them when my son was 6 1/2 months old, had plain x-rays taken that day, and within two days he was diagnosed with cranio. Until then, I had only read about positional plagio, and hadn’t realised there was a difference. We went to see the Australian Cranio Facial Unit within 2 weeks, had CT scans and some other assessment, and had surgery in September. Everything moved pretty quickly after the diagnosis.

Suture clearly seen as fused on the left; caused skull to grow unevenly A Day or Two After Surgery (no longer in PICU)

Positional plagiocephaly (caused by sleeping in one spot etc) is different to craniosynostosis, and its treatment is different. Craniosynostosis is treated surgically. My son had unilateral coronal cranio; he had cranial vault remodelling (CVR) in September 2006. As at March 2009, he is 38 months old, 28 months post surgery, healthy, strong and attractive, with a scar mostly hidden by his hair.

I’m not an expert, but if you have any concerns about the shape of your child’s head, I would recommend getting a referral to a paediatrician. My GP did not think there was a problem with my son, and no one else ever picked up on it either. My son was almost 7 months old when diagnosed, which is considered pretty late (very late?) – it is certainly better if it is picked up earlier. If you feel there’s a problem, don’t stop looking for answers until you are satisfied.

I would be happy for you to contact me – leave a message below! – if you’re facing a cranio diagnosis.

Of course, a post about baby wearing while in the hospital is sure to follow. As are posts about baby wearing in a new city; while travelling to and from interstate medical appointments; while doing laundry in short-term accommodation… you name it, a medical condition can make a difference to where you’re carrying your baby geographically, but you always wear your baby in exactly the same place: close to someone who loves him.

August 07 - a year after surgery

Resources:

Further information on craniosyntosis.

Have you faced a diagnosis of either plagiocephaly or craniosynostosis? Were you aware of the difference? Do you need to connect with someone who’s faced this diagnosis? Do you know someone else who does? Leave a comment. You’re not alone!

About ScarletRubies

Ruby is a woman living on the edge of reason! She has 4 kids - a 5 y/o daughter, 3 y/o son and her fraternal girl/boy twins were born between 6 and 10 weeks early 6 months ago. She is a ring slinger from way back but is finding the love of woven wraps in recent months. She has her stash spread out in several places around the house and cars so it doesn't appear to her husband to look as large.
This entry was posted in Personal Stories, Special Needs Babywearing, Special Topics and tagged , , . Bookmark the permalink.

48 Responses to When a Bent Head is More than Plagiocephaly

  1. Lara says:

    What a great post – it’s so wonderful that you persisted in getting answers for you son. It must have been a very scary time for you all!

  2. Steph says:

    Ruby, that little guy is such a cutie! Will he need any further treatment to correct the cranio, or is it over and done?

  3. Jenny says:

    That was a really interesting post to read. Something i’ve never heard off before. I think your little man is absolutely gorgous pre-op and post-op. It brought tears to my eyes seeing him laying there. I’m so glad you and your family got though everything and all is well. What a fantatic message to give to parents ‘ always follow your insincts’.
    Jen πŸ™‚

  4. Ruby says:

    Thanks for the comments; I agree, my darling boy is and always was a looker. Of course, I am vain – I chose photos I think he looks beautiful in and the post surgery shot was not as “bad” as it got (in terms of bruising etc).

    It is a situation that was scarier after we’d “finished”. While looking into things, and going through surgery etc, it was simply a matter of dealing with things as they came up and just doing what needed to be done. It wasn’t until much later I really took the time to freak out – and by then there was nothing to freak out about! Billy-boy needs to see his medical team regularly and will do so until he has stopped growing (16-18ish), but it doesn’t look as though he’ll need anything more done surgically. He may like to have the scar tidied up, and he may have issues with his eyes, but so far everything looks great.

    Listening to your heart when parenting is really important – we often squash down things because they don’t make sense, but if things keep bubbling to the surface, check it out.

  5. Hayley says:

    I have friends with a DS born with craniosynostosis, it was diagnosed very early on for them, after a difficult delivery.

    He is a bright and happy 6yo now, FULL of personality and he has handled the medical side of it all so well. He is sadly having issues with his vision however.

    Before this happened to my girlfriends son I had no idea at all about this issue.

    Thanks for sharing your story Ruby.

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  7. amir kamran says:

    my child have same prob and today he is 6th month old pls give me more detail what operation your child have and in 6th month age is too late pls help me
    amir kamran
    father

  8. Ruby says:

    Hi Amir,
    My son had cranial vault reshaping (remodelling) at the Cranio Facial Unit at the Women’s and Children’s Hospital in Adelaide. I believe other states have their own programmes, but this is the unit established by Professor David David, and my son’s surgeon, Peter Anderson, is a world leader in this treatment. A google search for their names will show you their contact details, but the first step is probably to see your GP and ask for a referral to a local paediatrician. They can then refer you on to the Cranio Facial Unit if that is the appropriate course of treatment.
    If you believe there is a problem, don’t stop asking doctors for referrals; my own GP – who I adore – didn’t think there was a problem initially. And no, six months is not too late – I believe earlier is always better, but later is better than not at all!

    Best wishes!
    Ruby

  9. Tania says:

    Hi Ruby,
    Thanks for sharing, and so pleased for you that he is doing so well as he grows up. I began reading and wondering how the parents must have felt, and about that poor little baby with the little surgery bruising – and then it hit me, as I scrolled down the pictures that it is you.
    You are a wonderful inspiration of endurance, and a testament to the love your family is filled with. Happy Days my friend.

  10. Alison says:

    Hi Ruby,

    My 9 year old son has just been diagnosed with craniosynostosis. From the age of about 9 months (it is so long ago I am not even sure of the age) until he was 5, he was seeing a specialist to monitor what was diagnosed as plagiocepahaly. At no time did the doctor ever suggest we get an xray or CT scan. I was told he would grow in to his “odd” shaped head. We have only picked it up now as a specialist we consulted about some fainting episodes said we should get a CT done. (the fainting has proved unrelated and of no concern – apparently, but my trust in doctors has diminished!!)

    We are yet to consult a surgeon, but surgery has been suggested by the paediatrician. I will certainly be asking about the surgeon you had – thanks!

    Your beautiful boy looks like he has recovered well from his surgery. I only wish I had been nore like you, and not so willing to accept what the specialist was telling me. I don’t think I even used the internet back then, so this sort of “forum” is a blessing for new parents today.

    thanks Ruby

  11. Tina says:

    Hi my name is Tina,

    I have a 6 month old baby and I have noticed that her head is miss shaped at the back, it protrudes quite a bit. I was taking Prozac for depression, gabapentin for depression and trazodone for insomnia for months prior to my pregnancy and the first 6 weeks of my pregnancy. I wasnt aware I was pregnant, my husband and were going to try once I was off medications and used protection that failed. Anyhow, I am concerned my baby has this condition, how would I know? Thank you so much for your time.

  12. Ruby says:

    Hi Tania,
    Thanks for reading and commenting, babe. Parenting is so much easier when surrounded by supportive friends!
    Love you,
    Ruby

    *****

    Hi Alison,
    Wow, what a strange journey you’ve been on. I think I’d feel really angry in your position, especially as you HAD been pro actively seeking treatment for your son! I’m glad the fainting episodes are ot connected with the cranio, but it must feel very scary to be facing treatment now with your son. I really wish you all the best; are you in Adelaide and likely to see Peter Anderson? I can’t commend him to you more highly as a surgeon and human being; he is a great guy.
    As for not looking around on the internet much, it really is wonderful how much more access parents have now to information and resources. Even 9 short years ago, there was much less information, and certainly a lot fewer “community forums”.
    All the best – and please feel welcome to stay in touch; I’d love to know how you get on!
    Regards,
    Ruby

    ******

    Hi Tina,

    Glad you found this blog post; thanks for commenting. To the best of my knowledge, craniosynostosis is not caused by drugs or medications, and in most cases, is not caused by an underlying syndrome (although there are some known syndromes). The only way to know for sure whether your daughter has cranio (and requires treatment) is to have her examined by someone who knows what to looks for – in the first instance, probably a paediatrician who might order skull x-rays. Any misshaping of the skull is caused plagiocephaly, but some is caused by positioning and some has another cause. I’d encourage you to see a paediatrician and find out for sure; if it does need treatment, it’s always better to start sooner rather than later.

    Good luck!
    Ruby

  13. Kiri says:

    Hi Ruby,

    My son is eight and a half months now and is scheduled for surgery August 13th. When I found your story, I felt like I was reading a story about my son and when I saw the picture it was even crazier! My son looks a lot like your little boy and has unilateral coronal craniosynostosis. I am scared to death that something might happen to him. Is there anything you can tell me to look out for or make sure the doctors have done? Anyway….your son is beautiful and I’m glad hes ok and it’s in the past.

    Kiri

  14. Ruby says:

    Hi Kiri,
    It’s full on, isn’t it? Are you having the surgery at the Women’s & Children’s in Adelaide? The Cranio Facial Unit will provide you with an itinerary of all the different appointments you’ll have in the days leading up to surgery – from photos to a couple of eye specialists, neurosurgeons and others I don’t recall right now. Because they do the surgery very frequently, they have things well organised. Oh, one of the doctors (can’t for the life of me remember which one!) has his offices away from the surgery on a street which there are two of – on in the city and one in a northern suburb… it’s the one in the northern suburb. We were *told* – and still made the mistake! πŸ™‚ Then again, the 13th of August is a Thursday and the Cranio Facial Unit generally does/did their surgeries on a Tuesday. So – if you’re not in Adelaide this isn’t going to help!
    There’s all sorts of things you can’t easily prepare for. If your son hasn’t already had a general anaesthetic, you might be surprised by the revolting smell of the gases when you get to be with him after the op. Also, after the op there won’t be much swelling or bruising – it takes a couple of days to come out. Our son’s eyes were shut for maybe a week, and that was hard; him not being able to see us and us not being able to soothe him visually. You can give the surgery staff his favourite teddy or muslin/blankie and his soother/dummy and they’ll give them to him in recovery as he is waking.
    I made a little poster for his bed (cot) with a photo of him all happy and beautiful so that the staff would see what he *really* looked like and might connect with him better; apparently that hadn’t been done before and they thought it was a great idea. We have an older daughter, too, so she helped us decorate his bandages (with stickers and stuff). I also wrote down the pronunciation of his unusual name!
    I guess the most important thing to remember is that you WILL get through it. You may not do everything (some things you won’t think of until later) but the surgeons have done this a lot – they will do everything medically necessary.
    On the social front, your family and friends will want to know everything that has been going on. You won’t have time or the energy to talk to everyone. Either make one person the “go to” contact – maybe your mum or dad – who everyone else can contact for updates and info. In our case, we set up a blog, and we posted info and photos almost every day. These days, a lot of people have Facebook, too, and you can make groups there and stay in touch with everyone in the one email or post. Certainly it’s worth making sure your mobile phone plan has the best SMS & call rates. If you’re away from home for a month like we were, you’ll need things like internet banking so you can pay your bills and so on – believe it or not, you’re going to feel as though the world is standing still and everything is revolving around your son. It isn’t; everyone else’s lives will continue and you still will have to manage all the other grown up stuff. We had our house broken into, job/leave issues, a birth (not one of ours!), a death… the world keeps spinning. You’re going to do great, though – because it’s just going to be one hour at a time.
    Feel free to write to me at ScarletRubies AT gmail DOT com – I’d be happy to tell you more as things occur to you, and I can send you a link to our blog if you’re interested.
    All the very best,
    Ruby

  15. Eleanore says:

    Hi, my daughter had craniofacial surgery on the 31st July and is now home from hospital, she is 12 months old, i was wondering how long it took for the swelling to go down to the point where she looks back to normal (So to speak), any advice would be great
    Thanks

  16. Ruby says:

    Hi Eleanore,
    Congrats on making it through a rough journey! You can take a deep breath and start to compute all that has happened over recent months.
    I don’t really remember the timing of swelling going down’ I remember we would go walking in the city he had his surgery and he wore a ‘danna while his stitches were still there (he would have been maybe 10 days post op I guess). We came home when he was 17 days post op, and I have a photo of him here:
    http://photos1.blogger.com/blogger/4560/3101/1600/glad%20home.jpg
    He looks SO skinny! He lost a lot of weight post operatively – or maybe it was just a case of any weight loss looking huge on such a small frame. In that photo, he still has the faintest tinge of bruising below his left eye (right in photo).
    I hope this will reassure you a bit. They do look like they’ve been hit with a bus after surgery, don’t they?
    Congrats and well done again! Many blessings to you & your daughter.
    Ruby

  17. Karen says:

    Thank you for the read of your experience – My 8 1/2 month daughter has just been diagnosed after initially checking her eyes 3 months as one was slighly bulging more than the other and the eye specialist pointing out the shape of her head as to us was not noticiable. Now with the misshape now more obvious gp sent us off to the peadiatrition (it took a month to get an appointment) but then it was straight to xray then CT Scan all in a matter of a couple of days…Outcome surgery and being in Tasmania the Peadiatrition said he would be sending us to Adelaide…available in Melbourne if we wanted but stated Adelaide was the Best..So now we move on to the next step telling hubby when he gets home from work and I have your story to show him.

  18. Ruby says:

    Hi Karen,

    I am so glad you are finding information about your little girl’s condition! There is a lot out there if you know the right words to search for – I remember when my son was diagnosed, I was searching for “plagiocephaly” only, and the information I found was really not relevant. Searching for “craniosynostosis” gets a much more relevant result.
    We are due to be back in Adelaide for our review in the next month or so; please feel free to write to me at ScarletRubies AT gmail DOT com; I’d be happy to give you my mobile number or a link to the blog we wrote while we were away. It’s possible we’ll be in Adelaide at the same time and I’d be happy to meet up with you and say g’day if you’d like.

    We were in Adelaide for about a month, with tons of appointments before surgery, then about a week in hospital and then follow up appointments. We went home about 17 days after surgery if I recall correctly. If our experience is typical, you can expect to have trips back to Adelaide for review after 3 months, then every 6 months and eventually annually.

    The Cranio Facial Unit do this surgery very often, and they know how to arrange all the appointments and so on. You will receive an itinerary letting you know where you need to be at particular times. Most days, you will have plenty of free time because the specialists all have their clinics on different days. If you can, find out if you are eligible for a Patient Travel Assistance Scheme (they will help with airfares and accommodation costs). For us, we needed the PATS referral from the paediatrician, then PATS arranged our airfares. I think we arranged out own accomodation, and we were very happy and comfortable at Greenways Apartments, on King William Road. http://www.greenwaysapartments.com/ It is right across the road from the hospital, and an easy walk to the CBD and a short uphill walk to the cafes and so on in North Adelaide.

    Do you have other kids? Keeping them happy and busy can be a task, but there is a day care centre in WCH that you are able to use during appointment times – my daughter had never been to day care, but she loved it!

    Anyway, there’s tons of stuff that might be helpful, but I don’t want to overwhelm you! Do shout out if you’d like any more tips or very biased opinions. πŸ™‚

    Blessings,
    Ruby

  19. Peter says:

    Hi Ruby

    How wonderful you have been able to share your experience with other parents. I have two sons, 17 & 13 who have both had craniosynostosis. Our first son was born in London & operated on at Great Ormond Street hospital. It was quite a traumatic journey for the whole family however our lovely son come through the op & was sitting up playing happily the next day. Your post op photo brought back memories of our boy trying to squint through the corner of his eye as he played with his rattle. A couiple of years after the operation we moved back home to Melbourne & four years later our second son was born. We were advised there was hardly any chance of the condition happening again but unfortunately we went against the statistics. The doctors were not concerned at the birth but I could see our second son had the same condition. My heart sank as I sat with him in my arms. My wife could tell there was something wrong & didn’t need to say anything. Our second son was operated on at 6 1/2 months. His condition was an exact mirror image of our older boy. I wish I could say the journey was easier the second time but I’m affraid it was just as worrying.

    Now on a much happier note, both our sons are living a wonderful lives. Our older son will need to have surgery on his jaw next year however that aside there have been no major problems. Both boys enjoy all the fun activities teenagers experience. The only things we put our foot down on were carrying on with full contact sports like footy. Unfortunately motorbikes & snowboarding don’t come under that banner. How did they get that one past me!!! They only occasionally mention their condition now. Both are handsome lads with curly hair covering the only evidence they have had craniofacial surgery. I’ve left the boys names out as I haven’t asked their permission but I hope our families story lets everyone know there is light at the end of the tunnel. The trauma doesn’t last forever & family life will be as good as you wish for.

    Peter

  20. Jennifer says:

    Hello Ruby, Thank you for your story i just got the news today that my son is diagnosed with this Craniosynostosis and i am not sure what it means whats going to happen or anything hes 3 months old and i am scared out of my witts and im looking for any and all answers to any of my questions i have is there any way you could contact me? do you have yahoo messenger or msn messenger or even just a email. I need support and answers to this thank you, and btw your son is adorable!

  21. Ruby says:

    Hi Jennifer,
    I’m happy to help out as much as I can – of course, you need to know I’m not a medical professional but I can certainly offer you my perspective and experiences as a mum.
    My email address is ScarletRubies at gmail dot com

    Talk to you soon,
    Ruby

  22. Joss says:

    hi Ruby,
    Thank you so much for your story – your little boy is just gorgeous! My 5 month old son was diagnosed with craniosyntosis last night and I have just spent all morning looking up info about it… am just devastated and so scared about this whole thing… but reading your story has lifted my spirits. Please can I email you to ask about your surgeons etc? Thank you so much,
    Joss

  23. Ruby says:

    Of course, Joss! It is a big and overwhelming diagnosis, and I would be happy to help any way I can. My email address is ScarletRubies at gmail dot com

  24. Janis says:

    Hi Ruby,

    I would also like to thank you for putting your story online. My son is nearly 3 months old and was diagnosed at 1 1/2mths. We are now just waiting to see neurosurgens. I, like the other parents am so so so scared and i really do not want my beautiful little boy to have to go through such trauma. It has really helped to see and read your story.

    Thank you again
    Janis

  25. Nathan says:

    Hi Ruby,

    Our little fellow (8 weeks old) is off to the pediatrician on Friday.

    His anterior fontanelle closed very quickly after birth and his head is not growing properly, down from the 50% percentile at birth to the 3rd. It looks like its starting to bulge at the back a bit and we fear a cranio diagnosis.

    We’re terrified and quite a bit lost; thank you for posting your success story, it gives us a lot of hope.

  26. catherine says:

    Hiya we are from N.Ireland and our wee bundle of giggles has been recently diagnosed with unilateral coronal craniosynostosis. We have much the same story as most, we were told that it was the quick delivery that caused the plates in her head to move in birth and that it would all settle down in the coming months. Her black eye did, but she has never had a visible eyebrow bone on the left hand side. Asked for a referral at 3 and a half months and was seen at 4 and a half months. Have had xray and following ct scan confirming diagnosis. She will be 6months on the 1st of Feb so we are anxiously awaiting a date for surgery. We’ve been told it will be within the next few weeks and as we are having to travel to Oxford Hospital in England, am now rushing around trying to get passports organised. Just wanted to ask if anyone has any idea if the altitude is an issue for the post surgery babies?
    Thank you for posting your personal photos Ruby as its given me an idea of what we are facing.
    Good luck and love to everyone on their journeys..Catherine

    • Ruby says:

      Hi Janis, Nathan and Catherine,

      It is wonderful to see people are still finding this article and being encouraged by the info here! My little guy is now 5, and has just started school. He is doing really well; he draws creatively and has great motor skills. I’m concerned about his ears – I don’t know if he has a hearing problem or a listening problem! We (his teacher, his dad and I) are waiting to see how he settles after a month of school before having any testing done. I am pretty sure it’s a listening problem rather than a physical one! He has fantastic curls, but wanted it cut shorter and “flat”, so it all gets brushed forward these days. I don’t think anyone sees his scars these days.

      Catherine, altitude does make a difference to surgical success as I understand it – but you’d have to be up a high mountain for it to make a difference… My husband reckons anything below 2000 feet above sea level would be fine. Your surgical team will be able to answer all those sorts of questions. Being away from home presents all sorts of challenges, but it also simplifies a lot of things, Catherine – you are free to just focus on the medical issue and not deal with the regular and mundane stuff at home. Perhaps you can start lining up friends to help at home with things like collecting mail and mowing the lawn (although this may not me an issue in winter!).

      All the very best to you – feel free to get in touch if you’d like to.

      Blessings,
      Ruby

  27. catherine says:

    Thank you Ruby, yes my physio (my wee one has Tort as well) has sternly told me to start getting into habit of asking for help..it is hard to ask for favours when everyone around you seems to have quite a lot on their own plates..but as its only for a little while im sure they will be only too happy to help.
    We have finally got a date for the specialist team in Oxford, we are going over on the 8th March, however the 1st appointment is for the consultation only. We are to be met by the entire team (some say up to 12 professionals in the same room) they will explain their roles and carry out their own checks and measurements and from this they will give us a date for surgery. It seems that they try to hold off until the child is as near their 1st birthday as is safe for the child. Myself and my hubby are fairing up a little better now, following the tail spin from the diagnosis, but wishing the surgery behind us.
    As for your wee man, I have a sister going through the exact same thing with her son at nursery. She’s unsure if its that he cant or wont follow directions/commands so from listening to her worries, I do feel for you, its not easy when you don’t know for sure! But will be thinking of you now when she mentions anything about her wee man and wishing you well with it all.
    Many thanks again for your response and hope to be in contact again soon,
    take care for now
    catherine x

  28. catherine says:

    Hi again Ruby, just a quick update. Met out surgeon 2weeks ago and feeling a LOT better. They are holding off until she is nearer 15-18months to do the surgery to reduce risk of re-occurrence. There may be a need for glasses post surgery due to pressure on the eye but they believe the risks of surgery at the mo. outweigh the risks of damage to the eye at this age. Have found a web chat room, Craniokids, and quite a few mums have been at Oxford hospital, and they all sing their praises so feeling a LOT less stressed about the whole thing.
    Want to thank you again, this was the first real life experience I read about and your pictures and story where soo appreciated! Never underestimate your story’s comfort to others..am on other side of world and found soo much understanding of my wee one’s journey ahead from your experience. Many thanks again.
    Hope you are well and will post after surgery to say if all went well.
    Many many thanks again,
    Catherine x.

    • Ruby says:

      Thanks so much for stopping back, Catherine; it’s lovely to hear from you. I hope surgery goes really well for you. My son is 5 now, and his vision is currently fine, but it is definitely something his doctors keep an eye on (no pun intended!).
      I found the CranioKids site well after our surgery, but it is amazing what is around on the internet! I’m glad you’ve found the info and support we all need/ed; and I’m really pleased our story was helpful.
      All the best,
      Ruby

  29. Positional Plagio says:

    Hi Ruby,

    What a terrific post! Thank you so much for sharing…

    We have a little girl – Haylea who is now 8 months old. At 3 months I noticed she was developing a flat spot to the right side of her head, along with a strong preference to laying on that side and not willing to turn her head to the left at all.
    I took her to the clinic, and was told give her more tummy time and as she gets more mobile it will grow out… Everytime I had a doc visit, I asked there too and was told the same thing. Eventually I finally got a paediatrician appointment as they are few and far between where we live. She did Haylea’s measurements and referred us to a physiotherapist as Haylea still wasn’t rolling yet either. We got a letter in the mail stating that Haylea was not considered a priority and that they would notify us when an appointment would become available – that was 4 months ago…
    As much as I was worried, getting that letter seemed to put my mind at ease – well if she is not priority it must mean that she is not as bad as I think, right? Wrong.
    Haylea then turned 7 months, and we finally got an appointment. Haylea still isn’t rolling and as much as we persist she HATES tummy time!
    At the appointment we were told quite frankly that Haylea has plagio and that it is quite severe (althought barely recognisable to the untrained eye) and that she needs a helmet – 23 hours a day for 3 months to start with.
    After much deliberation, we sought a second opinion in Brisbane, but were told the same thing – so now my little munchkin has a very trendy pink buterfly helmet which surprisingly looks quite cute!
    I am still quite concerned that my little girl doesn’t roll, but she does do everything else – sits by herself, stands against the couch and reaches for her toys, she has 2 teeth, is very vocal, and very switched on mentally – just lazy physically!!!

    I should point out that the main consensus in our decision was being toold that Plagio, if left untreated is recently being linked to learning difficulties in school πŸ™

    So now begins our road to improvement – fingers crossed for a quick one!!!

    • Ruby says:

      Hi! Thanks for writing. I really hope Haylea does improve exactly as planned. It must be tough on everyone to have a helmet on round the clock! At least the weather is cooling down now (hope 3 months will be enough).
      We were told that developmental problems could occur with plagio/cranio left untreated – I think I have the rate of 15% in mind, but I might not be remembering that correctly.
      My son is in school now, and his teacher thinks he’s pretty fantastic – but very much a normal 5 year old boy! I did think his speech was delayed, but don’t anymore. I also thought his hearing may have been affected, but now realise it was/is selective hearing… πŸ˜‰
      With Haylea not enjoying tummy time, are you wearing her often? She might really enjoy being in a mei tai or wrap… which gives you all the bonus cuddles, too!
      All the best,
      Ruby

  30. Donna says:

    Hi everyone,, my son Charlie also had craniosynostosis, he had aCVR for metopic cranio in Jan 2011, Hes doing very well, I was a mess not knowing anyone else whos bub had it or even heard of it,, so I started a group on Facebook,,, http://www.facebook.com/groups/294304613913107/
    Australian Craniosynostosis
    We have about 35 members now and always increasing.. Im sharing this so that others can have someone who knows what theyre going through.. Ty Ruby for making this blog and raising awareness,,, πŸ™‚

  31. Shakira says:

    Hi Ruby,

    I’m so wow’ed in reading your story, at the same time very concern I have a 3 months old baby and she has her forehead so uneven and its very noticeable in pictures. I spoke to her pediatrician and she checked the fontanella just to make sure they are not closing and so far its ok, but my intuition is telling me to look for further opinion and I know on time everything has a solution. My question to you is when your baby had the surgery did he require blood transfussion? The reason I’m asking is that I have read when baby go into surgery so young they loose alot of blood so I’m curious to know if all babies need the transfussion. Thank you so much for sharing your experience I’m sure lots of parents appreciate that especially concern parents like myself, I can’t hardly sleep just thinking if my baby will grow out of it but her forehead its more noticeable and I will definitely request to be referred to a specialist.

    Your baby is adorable and you are a mother to admire. Please reply as soon as you can please I will really appreciate it. Thank you.

  32. Ruby says:

    Hi Shakira,
    Thanks for reading and commenting. It’s tough, isn’t it, to know whether we are over-thinking things, or whether our intuition is nudging us toward an answer. I had a number of doctors and nurses tell me I was imagining things in the early days. Good people and good at their jobs, but didn’t know about Cranio.
    If you are losing sleep, you won’t be able to function properly until you get an answer, so I reckon you should gt a referral to a paediatrician sooner rather than later. If you’re wrong, the relief will be wonderful!
    There’s a new Facebook group (link in the comment above yours) and there are other parents from around Australia supporting one another.
    With regard to the blood transfusion, my son had one unit, which I understand is about the minimum – some kids need more. I gather that the surgery and procedures differ slightly from specialist to specialist. I’m really biased but I think ours was the best. πŸ˜‰ There are some kids with Cranio who won’t have surgery, some who have syndromes and other issues that mean different variables, some who have spring surgery, some who have cranial vault remodelling, some who need more than one operation, some who get infections… Any number of different events. We can’t control everything, but you are doing a wonderful thing by looking at your daughter and asking the right questions.
    All the best!

  33. bree says:

    This blog scared me at first but overall it help me see the light at the end of a tunnel that I haven’t even entered… I’m 22 & a new mommy of a beautiful lil girl:)) she is just being looked at for “flat head” & “big head” syndrome (i dont remember the medical terms) is scary when noone u know has been through this is like they look at me n say everything is ok but yet i feel like it can be my fault somehow. The more I look things up the more scared I get but I haven’t even got the results for her first test. Atleast I know I’m not alone … thanks:-)

    • Steph says:

      Hi Bree,

      You’re definitely not alone! I hope everything turns out OK for you and your beautiful baby girl. If you’re looking for some local support there’s bound to be a sling group close by that would love to meet you both xxx

    • Ruby says:

      Hi Bree! So glad you found this blog post and that it’s helped you see that wonky heads are a lot more common that you might have thought. How old is your daughter? I hope you’re enjoying being a mum, even with concerns for her skull. I am sure you’ll get a diagnosis sorted out soon. If it is craniosynostosis, there’s a group of parents on Facebook who support one another – families from all over the country, so maybe near you. https://www.facebook.com/groups/294304613913107/
      Are you using a sling or baby carriers? We, the group that started this blog, really encourage ‘baby wearing’ as a terrific way to bond with your baby, and still have the freedom to do other things you need to do. You can find advice and friendship at the variety of online haunts (including google groups and facebook) and in real life at local sling meets around the country. If you want any more info, drop a reply and let us know.

      Steph, thanks so much for replying so quickly! πŸ™‚

      • Donna says:

        Hi Ruby ,,Thank you so much for sharing the Cranio group on facebook xxx I ask when people request to join, where they found us and this blog comes up very regularly xx To be able to offer help and support to new mums going through this is so rewarding its amazing !!

  34. tya says:

    About 2weeks ago I went to WCH to consult about my daughter’s head and do an X-ray. She’s almost 5moths old.I was very shock when the doctor said that my daughter has cranoisynostosis, I thoughtt it’s just plagio. It makes me so upset, down, sad, and I don’t know how I feel like. But we stiil wait until the CT-scan to be done first. I have read your article and I found that it is very useful source for me. However, I still need more information about this particular situation for me to read through. Therefore, could you please send me your blog link? Actually we live in Adelaide now and all of my family is in Indonesia. I really want to meet you if u have time. I’m looking forward to hearing from you soon, please.

    many thanks,
    Tya

    • Ruby says:

      Hi Tya,
      I know it’s a hard and shocking feeling being told that the doctors want to do really drastic surgery on your baby. You can find my blog at CaelumsCranium.blogspot.com and I hope it will encourage you and reassure you. There is also a Facebook group you might like to be part of, Craniosynostosis Australia.

      Wishing you every bit of peace and comfort you are missing right now,
      Ruby

  35. Caroline says:

    Hi Ruby,

    My son Jonathan (Jonnie) has sagittal craniosynostosis and had a total cvr at 4 mths old πŸ™ it was very traumatic for us but we felt at least it was a once off… Until now! J is 2.5yrs now, I was unhappy with his language development (since last summer) and being my 4th child (and im a Montessori teacher) I felt there was a connection between his surgery and the delay… However due to the lack of knowledge in our healthcare system (Ireland) I was told at every turn that it was a coincidence. Anyway I scheduled an apt with his craino surgeon and the neurosurgeon that worked on him as a baby in jan and they took him in for a week in hospital in February to check his icp, anyway they have discovered he has fluctuating raised pressure on the brain πŸ™ they don’t know what caused it they suspect he re-fused over the last year or so… & they are recommending a second total cvr … We are currently getting a second opinion from London but are so upset at the thought of what most likely lies ahead… Any support or tips on coping would be most welcome!

    Warm regards,

    Caroline

  36. Caroline says:

    By the way your son is gorgeous! πŸ™‚

  37. lori says:

    Dear Love,
    as i started to read your story my heart was so sad, though the out come what miracles god does to us and our babies, praise God your lil man is adorable, and healthy!!

    my grandson Bryson he is 3 months old, when he was born I thought he was just beautiful, after 1 week I went to my daughters house to see him, O MY he had changed to strangely! so so bad, i said something to my daughter and she did get very angry at me and said he is fine mom!! so I let it go..
    3 weeks later I seen him again, and WOW he looked deformed very ODD to me, I said again to my daughter, “OK SOMETHINGS WRONG”
    (large head, flat on 1 side, eyes are different shaped, 1 ear is larger than the other, his half of his face is drooping very bad???)
    she said do you think mom? I am scared mom my da said to me, she then called the baby’s Dr. they said to bring him in immediately, so we did she was afraid of down syndrome, the Dr said “NO not down he does not have that”
    He has torticollis, but we need test, so today 6/5/2013 my daughter took our precious gift from god, “BRYSON” to Children’s Hospital for test, we do no he has torticollis for sure however they also did many test they did a spine xray, a few more we will no it all in 1 week, PLEASE pray for my baby grandson BRYSON, and my daughter TIFFANY as that he does not have to have this surgery…..
    again God Bless You, and your beautiful son!
    God Is SOOOO GOOD!
    Blessings,
    Lori

  38. Katya says:

    Hi Ruby,
    What fortune to have stumbled across your blog entry for two reasons…primarily because we are facing metopic suture correction for our utterly gorgeous, currently 8month old boy in roughly 3 months time. My husband and I are both from medical backgrounds but it was incredibly helpful to read your personal and human experience of the whole experience…right down to the details of the anaesthetic gases in recovery. I am certainly not looking forward to the bruising and swollen eyes…perhaps my biggest post-op dread.
    Anyway, the second reason that your blog caught my eye was the reference to babywearing! I am in the process of breaking-in a wrap that I bought specifically with the intention of wearing our boy while he recovers. Can I ask, were there any carries that were better or better-avoided (I’m certainly a novice, it will be summer and its a size 6 cotton/hemp didymos)?
    It is so lovely to see how well you have BOTH recovered. Thank you again for such a reassuring story

  39. Jill Turner says:

    Thanks so much for your story. I too applaud you continuing to trust your intuition on there being something that needed to be followed up. My little boy will have the vault surgery in the royal childrens hospital in melbourne this Tuesday coming. He is almost fifteen months old. I’d felt that I’d followed up my maternal health nurses initial concern thoroughly by going to see a paediatrician and having an x-ray – but had really believed that it would sort itself out (denial I guess). So now I have learnt to push harder an not just trust the professionals fairly blindly. I am trying to just be grateful that it has been discovered before he gets any older, and certainly whilst he will never remember the surgery. Thanks again.

  40. Fassiva says:

    Hi Ruby
    What a cutie! So glad he Is doing better.
    My daughter has an u even forehead. Had an appointment and Pediatrician noticed her forehead to be uneven. I freaked out when she said that and horrible thoughts rushed over my head. Is my baby ok? Maybe it’s a tumor? Just horrible. I did had noticed her left eye to be a little lower than the other but didn’t think much of it. Now that she mentioned it I see it. Her right side of her forehead is bumpier than her left. We have an appointment March 9th 2015 to see a skull specialist and I hope it’s nothing major. Do you mind telling me how your son was diagnosed? Thanks a bunch! ❀️

  41. Suzelle Prinsloo says:

    Ruby how can I contact u please I need ur advice
    Thank u Suzelle

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