6 Month Old with Microphthalmia

[Charny]

My 6 month old baby was born with microphthalmia in her left eye. Her right eye is fine. She has very poor vision with her left eye. She might see shapes. My doctor gives little hopes for her to have useage of that eye. He also recommended me to put a patch on the good eye for 1 hour a day, which is not easy, to see if the vision would improve with the small eye. My doctor is also recommending me to start using a conformer to make sure that my baby'S face is not distorted. I am worried if it would be a big deal putting it in every day. If anyone can help me with their experience with a similar problem, I would really appreciate it. Thank you, Charny

[ohbilatmicromom]

Hi Charny,

My name is Michelle and my now 7yr old son was born with bilateral microphthalmia with cataracts. He wears clear conformers/shells in both eyes as his left only has light/dark vision, but his right has some useful vision-colors/shapes/big letters. He got his first pair at 5mos old. I encourage you to get the conformers. It is intimidating at first to put them in, take them out, etc... But I promise you over time is becomes old hat. It is alittle difficult at first to get the right fit and it seems a very traumatic process, however, well worth it. They put Jalen under anesthesia to get the impression/mold of eye socket. But he's always awake for fittings. When they are babies its semi easier to hold them, but difficult for the occularist to see if it has the right fit. I don't have experience with patching as we tried to gain vision out of both eyes, but my suggestion is to make sure 100% the right eye is fine. I know there are other parents of unilateral micro, but not sure if they patched or not. We just used every single light up toy we could find for visual stimulation. That 's what they need at this young age. The TV was always on, even without volume and like I said we had numerous light up toys with music for visual stimulation. Where are you from and do you have an occularist yet? Congrats on your new baby(6mos not so brand new, but still new) and hang in there. Does the micro eye have any other issues? Cataract, coloboma, glaucoma? Just curious. YOu can also email me if you have any questions I might be able to answer. Sorry, not on here much as life is crazy busy! mballard@bex.net

[aprilk24]

Hi Charney! So happy you reached out to us! There are so many people that have similar stories to yours! I also have a son, Mason, who is 4. He has bilat micro with coloboma and cataracts (removed). He also had conformers placed from the age of 9 months to 2 1/2. They were stopped at that time because he was found to have the cataracts, had surgery and had improved vision from the removal. He now wears glasses. They told us the same thing about shapes, movement, light, etc. He is seeing that and more! I agree that conformers were hard and some days I wanted to give up, but they were beneficial in the end. Make sure you get an occularist you trust and have confidence in. Where do you live?
I don't have experience with patching either.
If you have more questions or would like to talk, email me at aprilk24@yahoo.com. We also have caring bridge for Mason: www.caringbridge.org/visit/masonarchibald
Best wishes to you....hang it there....she will amaze you and you will amaze yourself. Good things are coming! April

[Charny]

Thank you for your support and open caring hearts! It really makes me comfortable to have with whom to share and discuss my new adventure and hardships. I went Wednesday to a highly recommended occularist, located in New York City. His name is David Gougleman. He is an occularist for the past 25 years and he gives us lots of hope. He inserted the first conformer, which was not as bad as I thought, but Thursday her eyes were pink and blury. I'm wondering how soon will the conformer look clear, and her eyes be normal color again.
My 8 year old daughter is disappointed and doesn't like the way my baby's eye looks with the new conformer. It's very obvious that something is wrong and her eye even looks scary. Thank you so much again, Charny

[Janel]

Hi Charny,
I just wanted to tell you my story because we seem to have some things in common. My daughter, Lydia, has a micro left eye. Her right eye is normal, but she has no vision in her left eye. She is 3 now, and I have 2 older children ages 9 and 10 and also a 13 month old. All my other children have normal eyes.
Lydia's micro eye also looks very different. It is small, cloudy, and tends to be slightly pink due to irritation (her micro eye is sensitive, and the rubbing of her shell causes it to be pink). Lydia's pupil is also oval shaped due to lens removal surgery she had at 4 weeks old to decrease pressure in her left eye. Lydia got her clear conformer at about 7 months of age. When Lydia was in her clear conformer, her eye looked more normal because her eyelids were filled out equally, but the eye itself maintained the cloudy look. She has had her painted scleral shell since she was about 13 months old, and when she has it in, no one can tell that she has any eye issues. It has good movement and, unless it flips, it looks normal.
It has been a long process getting her through to this point. We had lots of tears (ours and hers), and we made several emergency trips to the occularist with corneal abrasions. But all of the struggle has been worth it because her facial structures have grown normally so far.
I also wanted to tell you about the reactions of my older children to Lydia's eye. My older children asked and continue to ask lots of questions about why Lydia has eye problems. It also bothers them that she looks different, and their classmates at school ask them questions. It bothers them to see her fight us putting her lens in every day. ( I wish I had all the answers to give them, and I have many of the same questions myself.) I just tell them to tell their friends that she was born with a smaller eye, but she is just fine and can do all the things they can do. When strangers ask what is wrong with her eye in public, I always answer truthfully and matter- of- factly, and sometimes it is annoying,( especially when they think she has pink eye and is going to infect their child) but I try not to let my annoyance show. My older children also ask questions about whether Lydia will be able to drive(which she will) and things like that. At this point, though, they play with her just like anyone else. ( I just make sure that she is wearing goggles when they play nerf guns.)
Since Lydia has no vision in her left eye, we did not do any patching with her. I was not aware of any special activities to do with her so we just played with her just as we did our older children when they were babies. Lydia did have delayed visual maturation in her right eye, and she has some nystagmus which I have been told is not uncommon. One thing we are doing now that she is 3 gymnastics lessons. I think this has helped her with figuring out depth perception, and she seems to be really coordinated and developing beautifully. We also play a lot of catch. She also goes to preschool, and is social and sweet and the other children seem to treat her well ( there are lots of times she goes to school without her lens or takes it out at school in front of the other children.)
I just wanted to add one more thing about starting conformers early. Now that Lydia is 3, other children sometimes treat her differently in public or stare when she is not wearing her shell. She is unaware of the reason at this point, and if a child is being unfriendly, Lydia is more likely to be extra friendly to that child and follow them around trying to engage them in conversation. With that being said, I'm sure there will soon be a time she will figure it out, and I am glad there is the option of a lens. Lydia still fights having her lens put in, and she still likes to take it out a lot, but I know some day she will appreciate her lens.
I just wanted to let you know I remember how hard those first months are but hang in there. I wish I would have asked for advice when Lydia was an infant. If I can help in any way, my email is jjhankins@charter.net
Janel

[ANDREICATALIN]

Originally Posted by Janel

Hi Charny,
I just wanted to tell you my story because we seem to have some things in common. My daughter, Lydia, has a micro left eye. Her right eye is normal, but she has no vision in her left eye. She is 3 now, and I have 2 older children ages 9 and 10 and also a 13 month old. All my other children have normal eyes.
Lydia's micro eye also looks very different. It is small, cloudy, and tends to be slightly pink due to irritation (her micro eye is sensitive, and the rubbing of her shell causes it to be pink). Lydia's pupil is also oval shaped due to lens removal surgery she had at 4 weeks old to decrease pressure in her left eye. Lydia got her clear conformer at about 7 months of age. When Lydia was in her clear conformer, her eye looked more normal because her eyelids were filled out equally, but the eye itself maintained the cloudy look. She has had her painted scleral shell since she was about 13 months old, and when she has it in, no one can tell that she has any eye issues. It has good movement and, unless it flips, it looks normal.
It has been a long process getting her through to this point. We had lots of tears (ours and hers), and we made several emergency trips to the occularist with corneal abrasions. But all of the struggle has been worth it because her facial structures have grown normally so far.
I also wanted to tell you about the reactions of my older children to Lydia's eye. My older children asked and continue to ask lots of questions about why Lydia has eye problems. It also bothers them that she looks different, and their classmates at school ask them questions. It bothers them to see her fight us putting her lens in every day. ( I wish I had all the answers to give them, and I have many of the same questions myself.) I just tell them to tell their friends that she was born with a smaller eye, but she is just fine and can do all the things they can do. When strangers ask what is wrong with her eye in public, I always answer truthfully and matter- of- factly, and sometimes it is annoying,( especially when they think she has pink eye and is going to infect their child) but I try not to let my annoyance show. My older children also ask questions about whether Lydia will be able to drive(which she will) and things like that. At this point, though, they play with her just like anyone else. ( I just make sure that she is wearing goggles when they play nerf guns.)
Since Lydia has no vision in her left eye, we did not do any patching with her. I was not aware of any special activities to do with her so we just played with her just as we did our older children when they were babies. Lydia did have delayed visual maturation in her right eye, and she has some nystagmus which I have been told is not uncommon. One thing we are doing now that she is 3 gymnastics lessons. I think this has helped her with figuring out depth perception, and she seems to be really coordinated and developing beautifully. We also play a lot of catch. She also goes to preschool, and is social and sweet and the other children seem to treat her well ( there are lots of times she goes to school without her lens or takes it out at school in front of the other children.)
I just wanted to add one more thing about starting conformers early. Now that Lydia is 3, other children sometimes treat her differently in public or stare when she is not wearing her shell. She is unaware of the reason at this point, and if a child is being unfriendly, Lydia is more likely to be extra friendly to that child and follow them around trying to engage them in conversation. With that being said, I'm sure there will soon be a time she will figure it out, and I am glad there is the option of a lens. Lydia still fights having her lens put in, and she still likes to take it out a lot, but I know some day she will appreciate her lens.
I just wanted to let you know I remember how hard those first months are but hang in there. I wish I would have asked for advice when Lydia was an infant. If I can help in any way, my email is jjhankins@charter.net
Janel

heloo ,

i am from romania and i have the same problems whit my baby ,he is 6 days old and i was whit hem at 2 doctors and they told me the same diagnostic micoftalmia at the left eye the right is ok im disperat cold tel me anywan the steps of the trataments the ages thet we most start them ..the doctors sais that i most stay 1 year is ok.....the problem is thet in romania it is not any clinic to hel me ...plese helppppppppppppppppppppp

[justinsdad]

Hi Charny - My 7 YO son has micro in his right eye (no vision at all). We have been with Mr. Gougleman for the last 5 years, he is great!!! I know how you feel, as i cried for days when we were told of his condition just shortly after his birth. We felt guilty, helpless. I just want to let you know that it does get easier, and you'll be amazed at what kids are capable of. My son is an avid reader, currently reading on a 6th-7th grade level and he is just going in to 2nd grade. He does everything that normal boys do (He wears glasses/goggles when playing sports). We have constantly praised him and let him know that he is a stronger person for dealing with what he has. I know how you feel, trust me. Have faith, keep doing what you're doing, she will be fine. Please feel free to contact me with any questions you may have.

God bless.