I have searched the forum for this but can only find things a few years old. Wondering if anyone is currently dealing with this with theirs bubs. My 13month old was diagnosed yesterday and i would love to have someone to talk to who has dealt with the same
Hemifacial Microsomia or microtia
- Replynowdammit
- Australia
- Total posts: 46
- Jamie_Leewilson
- NSW, Australia
- Total posts: 2
I have searched the forum for this but can only find things a few years old. Wondering if anyone is currently dealing with this with theirs bubs. My 13month old was diagnosed yesterday and i would love to have someone to talk to who has dealt with the same
- Former Member
- -
I have searched the forum for this but can only find things a few years old. Wondering if anyone is currently dealing with this with theirs bubs. My 13month old was diagnosed yesterday and i would love to have someone to talk to who has dealt with the same
what is it exactly?
- Jamie_Leewilson
- NSW, Australia
- Total posts: 2
Hi there,
We have a 3 yr old who was diagnosed with HMF at around 6 months old, hers isn't too bad small pit in her ear, smaller eye socket and prominently smaller jaw, all that can be reconstructed at an older age after she's finished growing. Her eyesight is great and hearing seems fine but all things have to be checked yearly. Once u've seen a craniofacial team u will understand a lot more, when they send u too the geneticist they will have a councilor there with support groups u can join and or people in ur area going through the same thing. It is all a little confusing and frightening at first but all calms down with knowledge smile
Hope this helps
Jamie-Lee
We have a 3 yr old who was diagnosed with HMF at around 6 months old, hers isn't too bad small pit in her ear, smaller eye socket and prominently smaller jaw, all that can be reconstructed at an older age after she's finished growing. Her eyesight is great and hearing seems fine but all things have to be checked yearly. Once u've seen a craniofacial team u will understand a lot more, when they send u too the geneticist they will have a councilor there with support groups u can join and or people in ur area going through the same thing. It is all a little confusing and frightening at first but all calms down with knowledge smile
Hope this helps
Jamie-Lee
- Replynowdammit
- Australia
- Total posts: 46
only just saw this! thanks for your reply. A craniofacial team and geneticist? we saw a plastic surgeon who discussed fixing her ear at around age 5 and jaw reconstruction at around age 14 but then we were sent hom, other than a check up in 12 months i've been given no info or anything. her hearing has not been checked.
she can not chew so she does speech pathology to help with feeding and talking (only says a few words at 16months) but i've not been given any other info just got to come home a google it and you know how awesomely soothing that can be! lol
who referre you to those other specialists?
she can not chew so she does speech pathology to help with feeding and talking (only says a few words at 16months) but i've not been given any other info just got to come home a google it and you know how awesomely soothing that can be! lol
who referre you to those other specialists?