ohbilatmicromom
12-30-2005, 03:04 PM
Hi Katie,
I too would like to congratulate you on your new baby girl! This is definitely a very emotionally draining process that's for sure. my son was born with bilateral microphthalmia with congenital cataracts so our situation is alittle different. He does have 2 eyes, they are just little and he does have some vision and not completely blind at this point. The first year or so is filled with doctors/specialists and quite hectic, but it really does get a little easier to handle, although new challenges always are arising, you just learn to deal with them better. I understand the feeling of being "alone" because our kids have such a rare occurrence, especially bilaterally, since its usually unilateral.
the reason they suggest a geneticist is because at the point in development the eyes start to form(which is quite early 10-16 days after conception I have heard,) so do other vital organs (brain, heart, etc..) they did an EEG, echocardiogram, MRI, IgG/IgM blood work, tested for other bloodwork as well such as CMV. I believe the IgG and IgM can be altered after birth cause they still have some from us (has to do with immunity stuff) and if you are breastfeeding can still be alittle high. All of this is to simply rule out any other issues. Not sure where you live, but your daughter will qualify for services also such as Early Intervention to get a vision specialist etc.. to come to your home. Again depends where you live what services are offered. If you have any questions or need to vent you can email me. My son is now 3 years old and on his 3 set of clear conformers. He had the first 2 sets added onto until they could no longer do it. He also wears glasses.
mballard@buckeye-express.com
Again, congrats, and Happy New Year!
Michelle
I too would like to congratulate you on your new baby girl! This is definitely a very emotionally draining process that's for sure. my son was born with bilateral microphthalmia with congenital cataracts so our situation is alittle different. He does have 2 eyes, they are just little and he does have some vision and not completely blind at this point. The first year or so is filled with doctors/specialists and quite hectic, but it really does get a little easier to handle, although new challenges always are arising, you just learn to deal with them better. I understand the feeling of being "alone" because our kids have such a rare occurrence, especially bilaterally, since its usually unilateral.
the reason they suggest a geneticist is because at the point in development the eyes start to form(which is quite early 10-16 days after conception I have heard,) so do other vital organs (brain, heart, etc..) they did an EEG, echocardiogram, MRI, IgG/IgM blood work, tested for other bloodwork as well such as CMV. I believe the IgG and IgM can be altered after birth cause they still have some from us (has to do with immunity stuff) and if you are breastfeeding can still be alittle high. All of this is to simply rule out any other issues. Not sure where you live, but your daughter will qualify for services also such as Early Intervention to get a vision specialist etc.. to come to your home. Again depends where you live what services are offered. If you have any questions or need to vent you can email me. My son is now 3 years old and on his 3 set of clear conformers. He had the first 2 sets added onto until they could no longer do it. He also wears glasses.
mballard@buckeye-express.com
Again, congrats, and Happy New Year!
Michelle