Still without helmet

[Guest guest]

Spencer was diagnosed with brachy and went into a helmet when he was

7 months old. He spent 7 weeks in his helmet but then it became too

tight and Spencer has since been out of his helmet while we waited

for the new helmet to be made. Last Tuesday we went in to pick up the

new helmet. I hated the look of this helmet right from the moment I

saw it. It just looked all out of shape compared to the first helmet.

Even our Ortho said it looked a bit squashed. We put it on Spencer

and the helmet was nearly covering his eyes, so the Ortho adjusted

that. But the one thing that has stopped us from putting this awful

new helmet on Spencer is that it squashes his left eye. As soon as

you go to pull the velcro into position his left eye goes all

squishy, make sense? I have concerns that with his eye like that all

the time it could do eye damage. So I have left the helmet off until

our Ortho gets back from Holidays. The other thing is that Spencer

can get this helmet off. He pushes it up off his head and I imagine

if we were to put another helmet on him we'd be fighting a losing

battle with him. So with that I think my husband and I have silently

decided that we are not going to pursue the goal of the perfect

shaped head in our son. His flatness is at the back and you can't

even tell from looking at him face on. I'm just wondering what

other's think, espcially those here with Brachy babes?

Cheers,

Alison Connelly (Burnie, TAS, Australia)

Spencer 10 months - Brachy, 7 weeks in helmet although between

helmets.

Fletcher 4 y.o. - CHD and POP Grad

[Guest guest]

Hi Alison,

My daughter Sydney wore a starband for 5 mo for brachy and had very

good results. She went from about 97% to about 85%. However I still

sometimes wish I had looked into a second band. Her doc and ortho were

very pleased with the results and according to the doc (cranio facial

plastic surgeon) our goal was to get her into the 80s, so we

succeeded. However she still has some weird flat spots that I notice a

lot and extra width. Maybe because I'm too obsessed with heads now! I

looked at Spencer's before pics, and his head also looks severe, so I

would try to do a second helmet (although I didn't see after pics from

the first one).

I would be concerned about a helmet that looks " squashed " and I would

ask the ortho to have it remade, but I encourage you to get some more

correction. Especially since he is a boy and his hair may hide it

less than on a girl. Sydney doesn't have much asymmetry, and also

looks fine from the front, but I do wish she had a perfect head.

-christine

sydney 2.5 yrs starband grad

>

> Spencer was diagnosed with brachy and went into a helmet when he was

> 7 months old. He spent 7 weeks in his helmet but then it became too

> tight and Spencer has since been out of his helmet while we waited

> for the new helmet to be made. Last Tuesday we went in to pick up the

> new helmet. I hated the look of this helmet right from the moment I

> saw it. It just looked all out of shape compared to the first helmet.

> Even our Ortho said it looked a bit squashed. We put it on Spencer

> and the helmet was nearly covering his eyes, so the Ortho adjusted

> that. But the one thing that has stopped us from putting this awful

> new helmet on Spencer is that it squashes his left eye. As soon as

> you go to pull the velcro into position his left eye goes all

> squishy, make sense? I have concerns that with his eye like that all

> the time it could do eye damage. So I have left the helmet off until

> our Ortho gets back from Holidays. The other thing is that Spencer

> can get this helmet off. He pushes it up off his head and I imagine

> if we were to put another helmet on him we'd be fighting a losing

> battle with him. So with that I think my husband and I have silently

> decided that we are not going to pursue the goal of the perfect

> shaped head in our son. His flatness is at the back and you can't

> even tell from looking at him face on. I'm just wondering what

> other's think, espcially those here with Brachy babes?

>

> Cheers,

> Alison Connelly (Burnie, TAS, Australia)

> Spencer 10 months - Brachy, 7 weeks in helmet although between

> helmets.

> Fletcher 4 y.o. - CHD and POP Grad

>