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Thread: Craniostenosis

  1. #1
    SarahCB Guest

    Talking Craniostenosis

    Hi everyone, Just wanted to say hello and i've been reading all of your posts and i think all of you are such strong mums and dads for everything that you are going and have gone through!

    My little boy Cooper was born with a lot of different "complications" and i thought it would be good to write my story here too, as reading your stories has helped me, i found myself saying "yes i know exactly what you mean" and "i felt like that too" as i read through a lot of posts about development delays and cerebal palsy and about being in hospitals all the time, hopefully this will help other mums to feel like they too can get through.

    Cooper is 10 months old born 10 April 2006, he was born with a keffel Haematoma (spelling?) on the back of his head, meaning basically a Very swollen head that was holding a lot of fluid, after a very traumatic birth he was taken away and put in the special care nursey as they didnt know what was wrong with him, they came in and said to me "its ok we dont think he has down syndrome", i didnt know what was going on my heart broke and all the new baby excitement just drained from my body, anything being wrong with him was so unexpected as i already have a 3 year old and had a very non eventful pregnancy.

    After about 2 mths and a lot of scans the swelling went down and revealed a very bumpy lumpy narrow skull shape and a very prominent forehead, the haematoma calcified (turned to bone) and more scans revealed he had severe saggital craniosynostosis.

    He also has hypertelorism (widely spaced eyes), a turned eye with a very stringy muscle, (he wears glasses), very weak neck and arm muscles, a split nose, tight rigid hips, bad reflux with aspiration and the peadeatrician says he may have a very mild case of cerebal palsy.

    The genetisists would love to categorise him and put a name to his "conditon" or "syndrome" because it is more than just craniostenosis, but after genetic screening and chromosone tests, they still cant as all the tests came back normal.

    Cooper has been going to an early start program since he was about 4mths old, there he sees a team of a physio, OT and a speech therapist (helped with feeding, and will help with speech much later), they give us exercises to help strengthen his muscles and have helped a lot with Coopers development. They see him once a month.

    Cooper has been in hospital a lot in his first 10 months of life and there will be a lot more visits in the near future. One night he stopped breathing, and was rushed to hospital where they worked out he had reflux and had aspirated, it was the scariest thing i have ever been through to see him white and non responsive (next to my 3 year old having a febrile convulsion). He has had 2 anesthetics for an MRI and CT, I was beside myself and they werent even operating, i cant imagine what i am going to be like when they do his cranio vault remodelling (major operation to re-shape his skull so the brain can grow) on the 24th May. He will be in intensive care for a couple of days then stay on a ward for a while.

    Cooper is about to have surgery on his eye to straighten it as the muscle is too stringy to turn it with patching or glasses, they have to operate on all 4 muscles in his left eye, that is coming up on the 28th of this month.

    He is doing well and is proving some doctors wrong who thought he may not be able to lift his head as he has just started sitting up and from his tummy can now hold his head up and is trying to get his legs under him to crawl!

    I praise the craniofacial clinic team of doctors at Sydney childrens hospital (where we are a lot of the time) they are fantastic and i trust them completely! and his paedatrician in Port Macquarie where we live, he is amazing and always on top of things and the early start team up here as well!

    I am going to put regular posts up here to reply to anyone or just to update Coopers progress. Thankyou to anyone who read my story!

    Sarah 23 & Brad 30
    Maddison 3yrs BEST SISTER IN THE WORLD!!! so loving and caring!
    Cooper 10 months

  2. #2

    Join Date
    May 2005
    Good ole NZ !!


    Wow Sarah... what an amazing mum you are to both your wee darlings...

    I am sure that Cooper will recover very quickly with a mum that is so strong & loving....

    Thank you for sharing your story with us... I hope that all goes well for wee Cooper & he has a speedy recovery....

  3. #3

    Join Date
    Oct 2004
    Outer Eastern Subs - Melb


    Welcome to BellyBelly, Sarah.

    Thank you for sharing your story. Cooper sounds like an amazing little boy who is obviously going to show the doctors just how much he can do.

    Good luck with his surgeries. I trust all goes well for a speedy recovery.

  4. #4

    Join Date
    Jan 2005
    in the valley of cuddles with mountains of smiles


    I hope Cooper continues to prove the Drs wrong and goes from strength to strength after his operations. Thanks for sharing your little champions story -you are doing a fantastic job.
    He sounds very inspirational wishing him a speedy recovery for his upcoming surgery.

  5. #5
    SarahCB Guest


    Thanks so much for the replies and well wishes guys!

  6. #6


    Thanks for sharing Sarah. Cooper sounds like a little fighter and an amazing little guy and I look forward to reading more about his triumphs. Good luck with his upcoming surgery - I hope he has a speedy recovery.

  7. #7

    Join Date
    Mar 2006


    Sarah I wish you and Cooper all the best in the coming surgeries. What an amzing person you are to be dealing so well. Its so hard to see our little ones in pain, but I'm glad you have a good medical team to support you and to have early intervention at such a young age will make such a difference - good on you.

    Please keep us up to date. I will be checking back often to hear about Coopers progress My prayers are with you.

    Natalie xx

  8. #8

    Join Date
    Mar 2005
    Sydney, NSW


    Thank you for sharing your story with us Sarah, and welcome to BB. You are amazing and strong and I wish you, Cooper and all your family the very best for the future. I will read your posts and be praying that Cooper is improving every day.

  9. #9
    SarahCB Guest


    Cooper has just had his first operation on his eye, to correct his turn and grommets have been put in. It took 3 very long hours (to me) but he is now recovered well, bit sore and swollen but happy and pretty much back to himself. The doctors have now told me that his major surgery (cranio vault re-modelling) in May, is going to take approx 10hrs. I am not looking forward to this, but we'll get through it. Thanks everyone for your well wishes!

  10. #10
    SarahCB Guest


    That should be it for now, they want to do more surgery when he's a bit older, but yes it depends on the results from the big surgery. It really is amazing though when you stay somewhere like Sydney Childrens Hospital, it really puts everything in to perspective! nothing else seems to matter when you're there, the kids that are there are so brave and go through so much, but they are happy and the parents are just amazing, they end up practically living there. People outside worrying about material things and getting places in a hurry, just makes you want to tell them to go spend a night in the kids ward. It also makes me feel very lucky.

  11. #11
    SarahCB Guest


    19th May 2007

    Cooper had to have his surgery in 2 stages as they said it was a huge surgery an didnt want to turn him during surgery.

    Cooper has finally had his long awaited cranio surgery. (first stage anyway) 5 1/2 hours. He was then in intensive care for 3 days and then we went to the ward for 4 days. He was such a good patient! he barely cried, though he was pretty doped up on morphene. He lost a lot of blood and had to have a blood transfusion and was hooked up to a lot of iv's for a few days, he had to have extra platelets to stop the bleeding but he recovered really well and we are all so proud of him for being so brave. His eyes were swollen shut for most of the hospital stay and opened by the day we got to go home. Maddi was great coming to the hospital every day, she was good for mum, who was looking after her and she mostly spent her time playing in the hospital play rooms and fairy garden, Cooper loved hearing her voice every day, even though he coulnt see her, he would still put his hands out to try to pull her hair when he heard her voice. Coops head looks great, the huge scar starts at one ear and zig zags over to the other ear, but it looks good, clean and not too sore and he hasnt lost too much hair. Now we are just preparing for the next stage which is on Thursday. I think he is going to be wise to what is going on though and will not be too keen on going back in to the hospital. The nurses and doctors and Coopers surgeons were brilliant, the nurses were so kind and caring and the surgeons did a fantastic job, we have complete faith and trust in them and wouldnt want to be in any other hospital in the world. Its very hard to see your kids go through any type of pain, if you could take it away and swap places with them you would, Cooper is a strong boy and we all have to be just as strong for him.


    2nd June 2007

    YAY, we are finally out of hospital!!! Coop is done. Hopefully no more operations for a while. He looks great and is pretty happy considering he has just had his skull taken apart, reshaped and put back together. Another 6 long hours, blood transfusions, intensive care, morphene, etc. etc. etc.

    Staying in hospital is like share housing, you share a bathroom, laundry and kitchen, you learn all the patients stories and you meet so many amazing strong kids and parents. You learn to appreciate everything so much more when you are in a ward with sick kids that spend so much time in hospital yet they are so happy and no matter what your child is there for there is always a family who have it worse than you. You also end up feeling other parents pain and you get emotional for them and with them.

    When you are in there (hospital) nothing on the outside seems to matter. The real world is just in the back of your mind, all the bills and trivial things dont seem to exist and all that matters to you is your children.

    The nurses and doctors at Sydney Childrens hospital are amazing and i love them for looking after cooper and caring so much! They even made maddi feel at home, they gave her craft and stickers and took her to the play room. The volunteers are so giving too, they come around everyday and give the parents a break, by sitting with your child or giving them a cuddle or playing with them if they are older kids, just so you can go and have a shower or a coffee or a well needed break.

    There was one family in there whose little boy had been in hospital for the whole 7 months of his life!! The mother is amazing, she has 2 other kids, of whom Maddi befriended and played with everyday and to see the mum just soldiering on and being happy dealing with this as her everyday life was inspiring.

    This week at the hospital is Gold Week, which doesnt just donate money to one particular fund, the money goes to the whole of the Sydney Childrens Hospital, which is a fantastic idea as there are so many different conditions and illnesses, all of which deserve much needed funds. If you are reading this please buy a gold week badge they are only $3 and every little bit helps!

    Cooper is still irritable and sore and has still got a way to go before his head actually looks "normal". His face has to grow and eventually his scar will heal and his hair will grow and cover it, but he is doing well so far and we just have to take everyday as it comes. We have more appointments with Cooper and other things to deal with besides his head but i will keep you posted... Thanks for reading and remember...... Donate to Sydney Kids Hospital Randwick !!!!!!!!!!!!!!!!! They deserve it !!!!!!!!!!!!!!!!!!!!!!!
    Last edited by SarahCB; June 2nd, 2007 at 12:43 PM.

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