Anyone heard of retinal coloboma?

iVillage Member
Registered: 11-04-2006
Anyone heard of retinal coloboma?
11
Sat, 11-25-2006 - 10:39am
Hi
My 3 month old has just been diagnosed with this and I am trying to find out more about it. I know his sight is affected and there may be other deformities. Can anyone help with links to a good informative site, or with personal experience?
Thanks
Dina

Pages

iVillage Member
Registered: 03-25-2003
Sun, 11-26-2006 - 10:06pm

I had a student with retinal colobomas -- which were part of his syndrome. How vision is affected depends on where the coloboma is.

There is more information at http://health.enotes.com/genetic-disorders-encyclopedia/coloboma.

There is also a website that I couldn't get to open called www.coloboma.org.

I hope that this helps.

Dawn

iVillage Member
Registered: 11-04-2006
Tue, 11-28-2006 - 2:12am
Thanks Dawn
I tried that other site as well but couldn't open it. However the other site was helpful - thankyou. I am just trying to find out what i can about the condition but I guess it is relatively rare as there doesn't seem to be a lot on the net about retinal coloboma.
Thanks for your help though
Regards
Dina
iVillage Member
Registered: 03-25-2003
Thu, 11-30-2006 - 10:24pm

Well, since coloboma (retinal and other types) are one of the characteristics of CHARGE Syndrome, you may find more information on websites about CHARGE. I would do a websearch on CHARGE Syndrome. That should help some.

Dawn

iVillage Member
Registered: 11-04-2006
Thu, 11-30-2006 - 10:34pm
Thanks Dawn
I will give it a go
Cheers
Dina
iVillage Member
Registered: 12-18-2005
Wed, 12-13-2006 - 6:28pm

My son has a retinal coloboma and he has Goldenhar's syndrome.

Photobucket
iVillage Member
Registered: 11-04-2006
Fri, 12-22-2006 - 8:13am
I am glad your son's vision has not been affected. I didn't know coloboma could be associated with so many things. My baby's coloboma has not been fully investigated yet so I don't know if it is part of a syndrome or just an isolated defect. I guess we will find out in the next month or two. At this stage nothing else seems wrong. Thanks for writing, I will look up Goldenhar's syndrome to find out more about it.
Dina
iVillage Member
Registered: 01-14-2007
Sun, 01-14-2007 - 9:40pm
My daughter also was born with Goldenhars syndrome and had a retinal coloboma.(along with other defects also) It did affect her vision and they had to remove it. Then she had a partial cornea transplant. HOPEFULLY it is an isolated incident for you and does NOT affect vision. Best of luck to you! PS lincolnpark email me sometime =)
iVillage Member
Registered: 11-04-2006
Thu, 01-18-2007 - 7:06am
Hi thanks for writing. I was interested to see they removed your daughter's coloboma - could they repair it? Was her corneal transplant related to the coloboma? Hope she is going OK
Regards Dina
iVillage Member
Registered: 01-14-2007
Sun, 01-21-2007 - 6:50pm
Hi dina, when they removed her coloboma part of it was on her cornea, so that is why she had the partial cornea transplant. She was also born with a partial eyelid so the surgery to repair that was also done to make sure the transplant was successful. Now that she is older her eyelid doesn't close tight like it use to so this is making "skin" grow on her eye to protect it. We are now going to have to have both of the surgeries done again. Have you hear anymore yet? I really do sympathize with you about being frustrated and not knowing. Keep us posted! Wendy
iVillage Member
Registered: 11-04-2006
Mon, 01-22-2007 - 9:03am
Hi Wendy
I have a specialist appointment in the middle of March which was as soon as I could get it - so we are still wondering what is going on. However so far it all seems good, he seems pretty bright and alert and seems to be seeing OK, so hopefully his problem will turn out to be relatively minor (fingers crossed).
I hope the surgeries go Ok for your daughter, please let me know how you go
cheers Dina

Pages