Mother w/ 4 week old girl with Microphthalmia

Hi, I am a mother of a 4 week old litte girl who was born with microphthalmia and coloboma of the left eye. I would like to get support and talk with others who have been through this experience with their own children, but I don’t know how to connect with other parents. Thank you for your help.

Hi, My 8 months old also has microphthalmia in her left eye. We did not discover it untill she was about 3 and a half months old and it was not confirmened until she was 4 months old. We have a contact lens for her left eye as she has very little natural vision in the eye. I am not sure that i can be much help but am happy to chat if you want to. Mary NZ

Hello. My son is 4 1/2 months old. He was born with microphthalmia in the right eye and coloboma in the left also. We have started the process of the shells or conformers for his little eye and seem to be having lots of problems. We are heading back in to the ocularist today to try to adjust the fit. My baby is miserable. Wondered if anyone else experienced this. Any insight would be appreciated. Thanks

I have a 6 year old daughter who was born with severe microphthalmia of her left eye (almost anophthalmia) and a coloboma of her right eye. We have gone through the process of enlarging her socket by increasingly larger conformers until she finally received her first prosthetic eye at 10 months. Our ocularist has continued to enlarge her prosthetic to continue putting pressure on her eyelids to stimulate their growth (her eyelid opening is very small, although her socket is now normal sized). Our latest visit to the pediatric ophthalmologist suggested that she has probably gained as much as she’s going to and we may need to consider seeing an ocular plastic surgeon to continue working on her eyelid. I would be happy to share any and all of our daughter’s journey. I wish you the best with your daughter.

Hi there, my son was born 13/06/12 and has been diagnosed with Right eye Micro Opthalmia and Left Optic disc coloboma. We have been placed under the care of the RVI in Newcastle. We have an appointment in May but in the last couple of weeks we have noticd a change in Olivers behaviour. Following an inprovement in Oliver being able to follow objects and lights and sounds he is now in the habbit on constantly rubbing both his eyes and at times seems to try an poke his own eye, any advice would be gratefully recieved.

Thank you

My son have micropthalmia in his right eye. May i know how the developmental milestone of your babies?
Because my son is already 8months old but he still cant sit on his own. And his pedia as us to check in developmental pedia. Thanks

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