Nystagmus in 5 month old Twin

[Helgabel]

Greetings-
I have 5 month old fraternal twin girls. At birth we knew that Twin B had an anatomical abnormality in her eyes. She was given a thorough work up in the NICU due to her size (less than 5 pounds). Twin A was 6.0 pounds. We were told that there is a blood vessel in an unborn baby's eyes that delivers blood to the front of the eye to further its development, and that normally, this blood vessel atrophies and is reabsorbed by the body at birth. Twin B's examination. however showed that this blood vessel is still present, tho it does not deliver any blood. They have called it a "stalk." Apparently some children have this blood vessel and it does not interefere with their vision, but in these cases it is a small, thin, flimsy stalk. In Twin B's case it is a more substantial stalk, and they have guessed that this is one of the causes of her nystagmus.
At around 6 weeks we took her to the Pediatrician because we thought she was not seeing at all. They sent us that same day to A I Du Pont Childrens Hosiptal in Delaware where we live. These same docs had consulted on her NICU examination. THey told us that she could see something, i.e. light, but it was not clear what else she could see. Within a couple of weeks, my MIL commented that she seemed to have Nystagmus. As a teacher, she had encountered several children with the disorder. There were times when B's irises were nto visible at all (we saw only white) or we'd see only half her iris (part would be above or below her eyelid). Now her eyes mostly slam side to side and occaisionally go up and down. We rarely feel that she is focusing on us and she does not respond to visual stimuli except for bright lights and contrasting light/dark, while her twin responds to our facial expressions and watches TV. She loves to hear laughter, loves touch and tickling, and loves clicking and popping noises. She makes appropriate pre-speech sounds and is physically very strong.
We tried to move up our Jan 11 appointment with a phone call in early November, but the said we could not get in any earlier. During that appt this week, the doc said they should have moved our appt up. He confirmed that B has "some useful vision" but does have a visual impairement. He recommended that I set up visits with the Infant teacher of the Visually Impaired through the Delaware Division of Visually Impaired. We have our first appt scheduled for 1/30/12. B is scheduled for an MRI on 1/27/12 to confirm the diagnosis and rule out any brain invovlement.
We are sad and a bid nervous. I want to do everything I can to help my baby grow up happy and confident. I often wonder if I did something while pregnant to cause this -tho Twin A is without symptoms. I had to take a meds during pregancy. I'll never know if she would have had Nystagmus anyay or if it is related to the meds.

[John Sanders]

Hi,

Thanks for telling us about your twin daughters. Rest assured that our scientific and medical advisers here at NN UK tell us it is highly unlikely that anything you did or took during pregnancy would have caused nystagmus in your daughter.

It sounds like you're doing everything you can to make the most of her vision and I hope the appointment at the end of the month goes well.

John

[StivenT1982]

Hi Laura,
It sounds like Jorja really is a miracle baby. While we all want our children to grow up "normal" and problem free Nystagmus is not the worst thing a child can have. My 4 year old son has CN and has grown up a very happy child is not bothered by his N at all. As your friend pointed out the best thing for a child is love and support and as long as Jorja has that from her parents she can cope with anything. Good luck with the tests.