Whether you turn to the right or to the left, your ears will hear a voice behind you, saying,“This is the way; walk in it.” Isaiah 30:21

Friday, May 4, 2012

newborn limbal dermoids/goldenhar syndrome

As I've mentioned before, Grant was born with two limbal dermoids-one on each eye, on the bottom part of each iris. Unless he is looking upwards, they really aren't noticeable as they are hidden by his bottom eyelid. What I haven't mentioned on here is that I found another "something" in the corner of one of his eyes when he was around 5 weeks old (do you see my concern as to why I took the Chapel Hill appointment instead of the local appointment!?) The "something" in the corner of his eye is a limbal lipoma.   

I don't have great pictures of either as they are concealed by his eyelids, but here is an idea of what is going on:



The dermoids are actually much larger and more "raised" then the picture conveys. The lipoma is hard to see because it simply looks like the corner of his eye, but there is a flap of tissue there that is definitely not suppose to be there.

We had Grant's ophthalmology appointment today, and after a full examination, it was determined that Grant's eyes are p.e.r.f.e.c.t! With Goldenhar Syndrome, it is common to have poor eyesight, blindness, or a whole slew of eye problems. His eye sight is great, they can focus perfectly, the muscles are strong, and the anatomy is as it is suppose to be! 

As for the dermoids and lipoma, the Dr. has suggested that we simply leave them as they are. Surgery is very dangerous and can ruin his eyes...so to fix something for the sake of vanity could make him have extremely poor vision, a drooped eyelid or eye, and/or simply ruin his eyes. Now, if they (the dermoids) become larger or grow hair (yes, they can actually grow hair!) then parts of it will have to be removed.

Unless something comes up, we are eye doctor free until his first birthday! 

I know this is just the beginning of a very long process dealing with Goldenhar, but tonight we are praising God and His sovereignty. 


4 comments:

  1. My Daughter was born in copenhagen in october 2011,has the same Limbal dermoid problem by birth in his one eye and in copenhagen doctor told us the same as told to you guys.
    But now a days my daughter is in Pakistan(our home country) and Eye dr. there told us to remove it as soon as possible by having surgery.
    So my daughter is going for surgery after couple of days. dr. satisfied us this is not a serious operation, so go for it.
    I will suggest you to go for surgery instead of leaving as it is.Because it ll create problems and will become more complicated with the passage of time.Its better to remove at the beginning of time.

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  3. I simply saw a plastic specialist in Beverly Hills for what I thought was a sebaceous blister on my temple. In the wake of inspecting it, he let me know that it is really a lipoma.
    thanks
    smita

    ReplyDelete
  4. hi, I am curious how the dermoid is developing now, years later? We have a three month old that was diagnosed with goldenhar syndrome shortly after birth, and he has a dermoid in his right eye.

    ReplyDelete

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