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Doc Ira - another question for you.

I have a nephew who was born exactly a year ago today at only 27 weeks AOG. He had a lot of complications then and one of them was that he had a porencephalic cyst (right parietal lobe) on his brain which as far as I could understand was brought about by a brain hemorrhage during
his first week.

He regularly meets with a neurologist and an opthalmologist and of course his pediatrician.

During his last check up with his opthalmologist, his doctor said that he has a pale optic nerve. My brother( the baby's dad) was not able to ask the doctor what the consequences of this are. Right now, my nephew wears glasses (you can just imagine how cute a 1 year old baby wearing eyeglasses looks like :D ) with 1500+ on each eye.


Will my nephew become blind? Up to now he still does not focus his eyes on us when we talk to him.

Thanks.

Comments

  • IraIra PEx Rookie ⭐
    Did he have his porencephalic cyst at birth or it only developed later? Porencephalic cysts are possible complications of hemorrhages, but when it accompanies other congenital problems like visual and hearing problems, developmental delays as well as brain atrophy, it sounds more like a sequelae of a viral infection during the early stages of pregnancy. How is his hearing, by the way? If an MRI was performed before, did the readings mention anything about his optic nerve?

    Anyway, pale optic discs may signify optic atrophy, which means that his optic nerve fibers are damaged at any point in their course from the retina to the brain. At this point in time, it's impossible to say whether your nephew's going to be blind, he's going to remain status quo, or if his vision is going to improve. Chances are though that even if improvement is noted, it's going to be slight. As long as you regularly bring him to his physicians for check-ups though, I'm sure they're going to watch over these problems closely and do something about it if it gets worse.
  • Thanks for the reply.

    Originally posted by Ira
    Did he have his porencephalic cyst at birth or it only developed later?

    He didn't have it at birth. On his first day at the NICU, he
    had a collapsed lung.
    The day after that, he had a brain hemorrhage and what they did for that was continuous blood transfusion.
    Porencephalic cysts are possible complications of hemorrhages, but when it accompanies other congenital problems like visual and hearing problems, developmental delays as well as brain atrophy, it sounds more like a sequelae of a viral infection during the early stages of pregnancy.

    The reason why he was delivered via C-section weeks before his due date was that his mother had pre-eclampsia. Would this have anything to do with his current condition?

    How is his hearing, by the way?
    We believe that his hearing is okay because he cries when
    he hears very loud noise i.e. his older brother screaming his lungs out.
    If an MRI was performed before, did the readings mention anything about his optic nerve?
    He didn't undergo an MRI but he was CT Scanned.


    Also, he sees an Occupational Therapist once a week because
    his left arm extending to his hand & fingers are very stiff in such a way that his fist is always closed and when he does open his fist, his thumb is still tucked in. HIs legs are also stiff which would make it difficult for him to walk if not corrected.
    Again, his doctors say that this is because of his porencephalic cyst. His left side is affected because the cyst is on the right side of his brain.

    If he had his newborn screening and was negative in all aspects, would there be no possibility of mental retardation?

    How long would it take him to catch up on his development?
    He turned 1 yr. old yesterday and still doesn't crawl or sit.

    Again, thanks for taking your time to answer my questions.



  • IraIra PEx Rookie ⭐
    Originally posted by munik
    Thanks for the reply.

    You're welcome.
    The reason why he was delivered via C-section weeks before his due date was that his mother had pre-eclampsia. Would this have anything to do with his current condition?

    No, not at all. I suspect your sister had an undiagnosed viral infection very early in pregnancy, but then, it might just be the law of averages (i.e., for every so-and-so infants born with no congenital problems, one will be born).

    He didn't undergo an MRI but he was CT Scanned.

    Your physician might want to consider having your nephew undergo an MRI to check the extent of your nephew's problem and how his optic nerve is. The CT scan will not really tell you that much.

    Also, he sees an Occupational Therapist once a week because his left arm extending to his hand & fingers are very stiff in such a way that his fist is always closed and when he does open his fist, his thumb is still tucked in. HIs legs are also stiff which would make it difficult for him to walk if not corrected.
    Again, his doctors say that this is because of his porencephalic cyst. His left side is affected because the cyst is on the right side of his brain.

    If he had his newborn screening and was negative in all aspects, would there be no possibility of mental retardation?

    How long would it take him to catch up on his development?
    He turned 1 yr. old yesterday and still doesn't crawl or sit.

    Again, thanks for taking your time to answer my questions.

    It depends...how much lagged is he in his social, developmental and intellectual development according to his neurologist? He is less than 8 months in physical development, but you haven't said how he is in other aspects of his growth. I think in cases like this, you may have to accept that there might be a possibility of retardation occuring. If you want, you can bring him to a child psychologist so that psychometric evaluation can be performed--it's probably hard on your family to worry about that occuring and not being able to find out right now. As for how long it will take him to catch up on his development, there is no hard and set rules. It varies from individual to individual.
  • As of today, after another visit with his eye doctor, my nephew is said to be legally blind. What's the difference between being totally blind and being legally blind?
    They say that he will only be able to distinguish light & dark, no resolution whatsoever.
    An eye transplant won't be able to change anything because it's the optic nerve that has a problem.
    What else can we do? He wears glasses only to prevent straining his nerves so he won't be totally blind.
    Is there anything else that can be done to help him see?

    It really makes me sad to think he'll grow up without seeing how wonderful the things around him are. :(

  • IraIra PEx Rookie ⭐
    Being totally blind means that there is no light perception whatsoever. Your nephew can still distinguish the presence of light, which is still good news. Right now, the best thing your family can do is to regularly follow up with his pediatric neurologist, his neurosurgeon, and his neuro-ophthalmologist. Unfortunately, there is as yet no treatment for optic nerve atrophy (which is most probably what your nephew has), and your goal should be to maintain whatever eyesight he has now, and hopefully, the situation will improve as his brain develops during his first 2-3 years. Hopefully he will be able to see his surroundings as he grows older. :)
  • thanks uli.
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