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Thread: Husband refuses surgery for our sagittal boy

  1. #1

    Default Husband refuses surgery for our sagittal boy

    Deep breath, here goes...

    My boy is 18 months old and even though I knew what he had from the age of 3 days, by the time I got through the health system he was diagnosed at about 6 months with sagittal craniosynostosis. We had 2 outpatients appointments at Alder Hey (Liverpool, UK) before going on the waiting list for the operation. Unfortunately, we had to wait so long that my husband, who was already not really accepting in the first place about having the op, had a massive wobble of confidence and now refuses to let him have it done.


    We went back for another outpatient appointment and despite the surgeon giving us the same information as we've already had, my husband seemed to hear only what he wanted to hear. He seemed to come away with the idea that he was being advised that he didn't need to have the op at all. The surgeon made it quite clear that he wasn't advising us either one way or the other. My husband came out of the appointment virtually skipping and jumping for joy. I came out just feeling worried about my son's future. We now have to keep an eye on him, have more tests and assessments in a year's time to check for inter cranial pressure. My husband is from a different country and totally different culture which means he misses details because English isn't his first language.


    My husband can't bear the idea of our boy going through the operation for fear of a) losing him and b) making him suffer by putting him through what he believes to be a totally unnecessary procedure.


    I can't bear the thought of him going through the op either, but the thought of him suffering physically or emotionally when he gets older bothers me more. I'd rather we got the operation over and done with whilst he's young and won't remember.


    He has scaphocephaly to a moderate degree, not everyone notices, but tellingly, my friend's six year old noticed it and commented on it.


    All of my husband's family are against him having an operation and don't see anything 'wrong' with him. A lot of people keep chipping in with their opinions saying he doesn't 'look that bad' - even my own dad. It's making me feel like they're all thinking that I think my own son is ugly, when the truth is I love him, would give my life for him and just want to protect him from both physical and emotional pain. It's true that's it's not as severe as some children have, but it's obvious from above. Hats don't fit him, for example.


    Basically I'm not getting much support from the people around me and I feel helpless. Mother's instinct is telling me the operation is the way to go. I don't know how to convince my husband or whether it's right for me to even try.


    Sorry for the rambling post.




    Elizabeth.
    Last edited by ElizabethR; 02-14-2014 at 06:51 PM. Reason: typo error

  2. #2
    Administrator Lauren's Avatar
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    I couldn't see it either, but trusted the doctors we had. The minute I saw him post op, even with the swelling and the wires and bandages, I instantly saw what the doctors did.

    Do you feel comfortable posting pics here? Maybe if you posted it and people weighed in you could show him that and he would see? We also have the cranio adults forum and there are several adults there who desperately wish they had the surgery as a child.

    My son was classified as mild, and particularly with sagittal they don't have a concrete reason to do the surgery. WIth the other sutures, vision and symmetry and other factors make it necessary. Sagittal doesn't always have the other issues so it does come across like surgery is optional. Having done it, I can say it is the single best thing I did for my son. He's 13 now (and devastatingly handsome if I do say so myself ), and nobody can tell he had it as a baby.

    I don't envy your position. Having a husband who is against the surgery would have been incredibly difficult.
    Lauren
    Mom to Matthew (sagittal, surgery 11/9/01 at NEMC in Boston) and Danny

  3. #3
    lovin' my lambdoid cutie boy! evergreenmom's Avatar
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    There are many threads in the cranio adult forum which give extremely good reasons as to why surgery should be done now. I recommend you read through them and print out the worst stories and go through with a highlighting marker and underline most important parts. We have seen many fathers be quite resistant but if they are properly educated they can be swayed. You could also contact Headlines (a UK craniofacial association) and ask them for advice. I believe if you were willing to fight it out in court you would win but it would likely spell divorce for you so probably not your best option. Perhaps you could hire some sort of mediator? I just don't know. The idea of someone forgoing this surgery which is generally always performed for the child's best chance at a normal life is pretty shocking particularly if they are using their own inability to properly understand the nuances of what experts are telling them as a justification...not good enough. Good luck figuring this out, keep us posted...
    Kristin, Momma of two rambunctious cuties:
    Lucy born 3/05 "failure to thrive"- negative percentile on growth chart for weight 3/06 to 3/08
    Xander born 3/08 Left Lambdoid Synostosis and Chiari Malformation- Posterior CVR Surgery 2/09 w/ Dr Fearon and Dr Sacco at Medical City Hospital Dallas, TX (fought insurance and won in network gap exception) rant rant rant....

  4. #4
    On the other side again! jjmc123's Avatar
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    Sorry you having to deal with this. I found pre-diagnosis everyone would tell me my son was fine. Once he had a diagnosis, then everyone came out of the woodwork saying I knew something wasn't right!! It increased further after surgery. Many people don't want to tell you they see something wrong in your child. The surgery seems bad, but its really not. You won't believe it until you see it. They bounce back so fast. You are in a rough situation disagreeing with your husband. I think you should try to educate him as best as you can that surgery is the best thing.

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  5. #5
    Mum to Rebecca
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    Has your husband seen some before / after photos of Sagittal little ones? I'll happily send you a couple of my little one if you think it'd be helpful (especially given it's be the same surgical team doing it). Also I agree that the adult section will be helpful to share the views of people who didnt have it done as a child. If the consultants have recommended surgery then I'm sure it is the right way - they wouldn't recommend it unless they feel it is needed. I hope you're able to find a way forward.
    Wendy:

    Mum to Rebecca born 8.1.10 - diagnosed sagittal cranio. surgery at Alder Hey on 14.1.11.

    We've made it to the other side

  6. #6

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    He has scaphocephaly to a moderate degree, not everyone notices, but tellingly, my friend's six year old noticed it and commented on it.
    It might've been the first comment but it won't be the last. He'll have to put up with these comments and closeted discrimination for the rest of his life. Get the surgery done.

  7. #7

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    Hi there - sorry you are stuck waiting so long in the system - it is inevitable that with time, fear can cement regarding the surgery. Our lo was diagnosed at 22 mths and had her surgery at 26.5 months. Her head was always different but it was only when she was not keeping up in her speech development did anyone start to take notice that their could be a bigger issue. She is now 3 weeks shy of her 4th birthday and doing wonderful, her speech delay actually rectified itself within weeks of surgery. Her headaches disappeared and she actually began to sleep through the night and stop chewing everything in sight (what I think was pain displacement).

    Kids when they don't know what hurting feels like they can't necessarily tell you. All of our docs told us that she had minimal to no icp, but post op the speech issues cleared up including a strange gross motor issue with her tongue when she attempted to speak, and she stopped crying all the time. The PS came into our room 1 day post op and thought she was asleep bc she was being so quiet, I said nope, she's awake (her eyes were swollen shut at this point) and she said hi to the dr. He was amazed, he was expecting she would be screaming and fussing, not my strong little girl. Finally he said, maybe her pre op pain was so bad that the post op pain isn't actually painful by comparison.

    There are lots of reasons to consider surgery for sagittal, it will not get better, but only become more exaggerated over time as the head grows to full size. I hope you and your husband come to a decision that you both know is right for your lo. I can share some pics via PM if you want, sometimes it helps to see an older child who has been there done that.

  8. #8

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    I finally decided to make the decision on my own, regardless of what my husband thinks. I told him I was putting our boy back on the waiting list. He's now 3 and 1/2. My husband says he doesn't support me in this decision, but gives his consent. Alder Hey phoned me a few days ago with a date, bit unfortunately my parents and husband are away and although friend have offered to look after my 5 year old son, I know he'd feel uncomfortable about it. So it looks like it'll be around April that he'll have it done. It's a massive relief.

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