16 Answers

My daughter is 4 months old she has saggital Craniosynostosis. For those they don’t know her saggital suture has prematurely closed allowing her brain to basically only grow forwards and backwards. Apart from a funny shape head it can affect development delays death if the pressure on the brain is too extreme, eye problems ect. She has to have major surgery when she is 10 months old the procedure is very long and hospital stay they generally stay 7 days. I’m finding it really hard to cope especially money wise we don’t even have a functional pram! I myself need to have a third knee reconstruction booked in for October so I’m very overwhelmed struggling to carry bubs in a carrier as she gets even heavier. Has anyone dealt with craniosyntosis or know of people what support is there and how did you cope with it also how did your baby cope after surgery? Thanks in advance.

Posted anonymously, 24th April 2014

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  • No, I’ve never had to deal with this problem, nor have I heard of it until now. I hope it all went well for you and bub

  • I have a friend whose daughter has cranio too. She is now 3yos and had 2 operations. She’s a very happy little girl, reaching all her milestones. I know how hard it has been on her. I will ask her if she knows of any support groups x

  • Oh I’m so sorry to hear this! Did she have surgery yet? How did it go. My baby is 6 months and his fontenell is nearly fully closed so I’m hoping he won’t be ing he same boat! Hope you and your girl are doing well

  • Depending on where you are the hospital should have some social workers who can help to facilitate some assistance for you, unfortunately the safest option for your child is to get the surgery. Wishing you the best of luck!

  • that is so sad, i feel for you all and hope for the best

  • I feel for the hard time you are going though, I wish your little girl luck and hope everything works out longterm for you

  • I would suspect the hospital would be able to point you in the right direction for support groups. In terms of getting equipment for bubs, try approaching the salvation army.

  • I feel for you. I had not heard of this until reading this. I am assuming you get a disability payment for her as you would qualify. If I was you there are a lot of people within the community that would help out. You can go to centrelink and ask if they know of charities and also look at facebook buy sell pages in your are, sometimes they offer freebies and other sites are opened just for free things. I am sure if you write a post people would donate as well. You can also start up a page that is buidling funds by donation explaining your situation as I have seen this done. I know of St Kilda mums which is set up to help people like you. Are you in Melbourne?

  • Don’t know about the surgery but you could try Gofundme.com, the Salvos, or your local Lions or Rotary clubs for help with getting the equipment you need – like a pram.
    Hope it all goes well.

  • I had never heard of this before. Interesting to learn.

  • I hope everything works out alright for your daughter and you. There is a page on Facebook called Craniosynostosis Australia. It is a closed group there is another one called the same name. I’m sorry l cannot give you any other info on it than that. If you are on Facebook maybe you can check them out. It says there are 284 members of the group so hopefully there will be someone there who can let you know what support is out there for you and your baby. As for the pram maybe try calling St Vincent de Pauls, they are fantastic and maybe can help you out with a decent pram and other supports. I wish there was something more l could do for you. You could even try posting on a Facebook buy swap and sell page for your area. I have seen some lovely people actually buy the item that the person was in great need of and give it to them.

  • My nephew was born with this.
    He will be at 12 next week, he coped surpisingly well.
    He still goes for regular check ups though as it was discovered his skull has stopped growing :(
    I will definately recomend contacting the hospital though as there is support out there!

  • So sorry your daughter and family has to go through this. Ask your local community services to see if they can help, they are set up to help. Also get your GP and specialist to push for medical assistance support, they just need to write a letter this should help trying to ease financial pressure. Support groups, I would suggest google and see what comes up. Wishing you all the best

  • Look on Facebook for freebie sites and see if you can get a pram that way or ask in any BSS group you will be amazed someone willl know where you can get help to get a pram. sorry I can’t help on anything. Oh except see if there is a support group on FB as well

  • Unfortunately I can’t offer any advice other than to speak to the hospital about support services (as the other comment also suggests).

    I absolutely feel for you and I can’t imagine what you’re going through. I wish you and your family all the best :) don’t forget that other mums – even if they haven’t been through the same situation, can sometimes be a great shoulder to lean on or vent to :)

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