At what point would you put your kid through major surgery

[gibbinator]

I think I would do it. But I realize how scary it is - especially anything to do with surgery on the skull.

Ds1 had plastic surgery on his hand for purely cosmetic reasons when he was 1yr (webbed fingers). I kept asking myself if the risks associated with surgery (anaesthetics, infection, etc) outweighed the benefits of fixing a minor deformity that would likely negatively effect his social development if left, but whish wouldn't physically limit him (heck he could have been a great swimmer...). We did ultimately decide to do it though just to make his social life easier...

Similarly ds2 was born with a very narrow head and his Dr was concerned about craniosynostosis. Before getting the test results that he was fine, the surgeon explained that a lot of kids who don't get the surgery go on to suffer from various, and severe, psychosocial disorders because, though their cognitive development is fine, they look so different they generally suffer a lot of ridicule and exclusion.

Good luck making the decision for your family. I'm really sorry you're in this situation.

[boiler717]

I don't know if one could say the purely cosmetic -- he may not need it for his physical health, but it could influence his mental, emotional, and occupational (as in having standard helmets, glasses, hats, etc fit) health.
Are there any differences in risks when having the surgery as an infant vs an adult? If it's a much riskier procedure as an adult it may be worth doing in infancy. My husband has a congenital defect that would have been a much easier surgical fix as an child but now is too risky as an adult to fix.

[laurenh]

I'm so very sorry you're faced with this, Brie. I wish there were a clear path for you to follow. Hugs.

I think that if the surgeons were pretty confident that the surgery would help his head shape normalize as he grows, I'd be inclined to do it and I also think I would probably be inclined to schedule it sooner rather than later, because his mobility and desire to be active will only increase.

[cece]

Aug 13, 2015 17:40:04 GMT -5 @tokenhoser said:

Can you just lay it out for the doctors and say "Listen, I am not qualified to decide this. What would you do if it was your kid?"

Because that's how I would feel - just... unqualified. You do the best you can and that's all you can do.

As tough as this decision is, I think I would take this approach.  Maybe he can say something that will help you become more comfortable with your decision either way.  I can't say for certain what I would do as its one of those things you can't really know until you are in the situation, but that being said, I think I would do the surgery.  

I must say I admire the strength and poise you continue to show through all of this.  You are an incredible Mom.

[loskadoodle]

In so sorry you even have to think about this. If it were me, I would probably do it. I feel like I would want him to try to have as normal as a life as possible and I think that would help that. I hate to be like that about something cosmetic but I feel like people judge things like that so much and I wouldn't want my child to have to deal with that.

[Brie]

Aug 13, 2015 19:41:24 GMT -5 @fivedogs said:

And I would totally want to think/talk/research about it now and make a tentative decision. I am not like your H - I can't just not think about it for months. My brain doesn't turn off that way.

I am like you. It's so hard for me because as soon as I bring it up he thinks I'm overreacting and that we should just hope for the best and listen to the doctor. We cope totally differently and it's so hard.

[arebee]

I can understand wanting to have a decision or plan in place. I hate having decisions hanging over my head.

I think I would do the surgery. The fact that the surgeon feels confident that it would be successful but doesn't know what would happen if you don't do it scares me. I also agree with what PP have said about kid's being mean and how it might make things easier down the road if the surgery is done.

To make myself feel better about my decision I would do what others have suggested and ask the surgeon what he would do if it was his kid.

[fryjack2]

I'm sorry you are dealing with this Brie, but I am impressed with how level headed you are in thinking this through.

I'm about to send you a PM. Look for it in case you are on the app.

[erbear]

No wisdom, only this story. My DD1 had cranio surgery at 9 months. The lead up to it sucked, but the surgery itself was fine. She did great and it made a huge difference in how she looked. It's a surgery with great outcomes. PM if you want more info/have questions/want to see pictures.

I agree with whomever said to speak with the surgeon. Hugs, mama. It's hard stuff!

[Deleted]

I definitely see why this is a hard decision. Is there any support group through the hospital where you can talk to other parents? I would find something like that really helpful. Big hugs.

[sent]

Aug 13, 2015 22:55:48 GMT -5 @cse1960 said:

My son (age 19 last year) had a huge surgery last summer; he had a severe underbite and cross bite, Stage 3 whatever. It was deemed cosmetic so insurance did not cover it. They cut his entire upper jaw off through the upper palate, pulled it forward 6 mm, sliced through the lower jaw on each side and removed 3 mm of bone and pushed it back that space; used metal straps to hold it all in place and wired his jaw shut for 6 weeks. (They also took out his wisdom teeth at the same time and repaired a deviated septum). The risk of infection was high, and the risk was there that he would never regain nerve function in his face at all. He could not raise his lips in a smile for months. It was terrifying.
And, a year later, he has a perfect bite and a dazzling smile. He was dreadfully unhappy with his appearance, and never smiled before ;and he had a terrible time chewing in any event with the cross bite. He looked FINE to me before; no one made fun of him, no one ever so much as mentioned it but he was so so unhappy about it. it cost us a huge sum of money and him a great deal of pain, but he loves his face now. he likes what he sees when he looks in the mirror. It was worth everything.
So, I'd say, absent other reasons why not, I'd go with the surgery.

I recommend this type surgery to my patients a lot and it is so so so hard to get people to go for a consultation with the surgeon.  My assistant actually went through with it last year so it is helpful to have her tell patients how things really are.  Still we struggle because like you wrote, many people do view this as totally cosmetic.  As a resident I used to treat a lot of children who had cleft lip and palate and those kids were undergoing surgery a lot and so strong.  One of my best friends from growing up had surgery for her CLP when we were in high school and it influenced her life so much she is now an amazing surgeon giving back to her community.      

I have not treated a patient with craniosynostosis, but given the information you wrote, I would do the surgery.  I would not focus on the surgery mechanics.  From what you wrote, it sounds like the surgeons have very good skills in the actual procedure they are proposing to you.    

[auntie]

Aug 13, 2015 20:17:03 GMT -5 Brie said:

Aug 13, 2015 19:41:24 GMT -5 @fivedogs said:

And I would totally want to think/talk/research about it now and make a tentative decision. I am not like your H - I can't just not think about it for months. My brain doesn't turn off that way.

I am like you. It's so hard for me because as soon as I bring it up he thinks I'm overreacting and that we should just hope for the best and listen to the doctor. We cope totally differently and it's so hard.

This is the challenge of special needs parenting distilled to a single sentence.

Kids with special needs, as opposed to life threatening conditions, aren't usually on the same page. And the more subtle or delayed the presentation or risk, the more divergent their processing of the situation will be. Dads are almost always a few steps behind which can challenge the best marriages when one (almost always mom who has more information about typical child development) has a heightened sense of urgency and the other (usually dad who goes into full on risk avoidance) who wallows around in a state of hopeful denial. 

The challenge is to get to consensus if there is an obvious window of opportunity- like when a dad refuses to contact EI about a speech delay because he's certain a language explosion is just around the corner and the child ages out of free speech services.  Or a child loses time in school because a surgery was postponed until it became an emergency situation. 

Not the same situation, of course, but at Chez Auntie it was a good couple of years before DH and I were on the same page. Hell, it was a good 6 months and a second opinion before I could lure him into the library and pick up the book. He didn't so much ply the well known river in Egypt, as he tried to convince me that by virtue of his Aspergers DS was some sort of nobler and more highly evolved being. 

[Ashley&Scott]

Aug 13, 2015 20:17:03 GMT -5 Brie said:

Aug 13, 2015 19:41:24 GMT -5 @fivedogs said:

And I would totally want to think/talk/research about it now and make a tentative decision. I am not like your H - I can't just not think about it for months. My brain doesn't turn off that way.

I am like you. It's so hard for me because as soon as I bring it up he thinks I'm overreacting and that we should just hope for the best and listen to the doctor. We cope totally differently and it's so hard.

That's not really fair for him to expect you just stop thinking/talking about it until December. I'm like you, I would need to talk about it in depth & examine every possible scenario. Even if you don't make a decision until the consult I would still want/need a plan. If X happens then we'll do Y, if C happens we'll do D, etc. 

I agree with everyone else that suggested asking the surgical team what they would do if it were their child. Can you move the consult up? If you've seen noticeable changes in the last 2 months maybe you could get an appointment in October or even November. 

Good luck Brie.