Picture for concerned about baby's eyes.

[KATE535]

I have a friend who has a young baby, I have recently seen a picture of her baby on Facebook but her pupils are white. I've heard this can be a sign of problems with the brain and blindness. Should I tell her about Retinoblastoma (maybe she hasn't heard of it) however I don't want to frighten her unessesarily if I am wrong.
I have enclosed the photo.

[John C Hagan III, MD, FACS, FAAO]

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[kv123]

I was wondering what the disposition was with your friend's baby. Was it retinoblastoma? Hopefully they got multiple opinions from multiple doctors before any surgery would have been considered. I was diagnosed with retinoblastoma at 13 months of age. My left eye was removed and an implant and prosthetic put in place. My right eye had 20/20 vision until age 45. My children (3 of them) had no sign of retinoblastoma and are all healthy. There are 2 forms of retinoblastoma (heredity and non-heredity). A significant sign of retinoblastoma is a displacement that can be seen on the long arm of chromosome 13. I was treated as a retinoblastoma patient by my original doctors for 20 years and always had to inform my doctors since then, particularly for my children, that I was a retinoblastoma patient. Also was advised not to have any children. I did not know until my daughter was born in 1991 that genetic work done on me in 1988 along with capture of the pathology report from 1955 proved that I did not have retinoblastoma but may have had a retinal detachment and possible Coates disease. My doctors that performed the enucleation concealed the truth throughout my life which was and still is very disturbing to me. Ironically, I located an article in the medical journals about 1000 eyes enucleated between 1949 and 1960. It identified a large percentage of eyes where pre-diagnosis was incorrect. A follow-up on that article led me to the AFIP in Washington. Oddly, they still had my eye in a paraffin block. I explained my situation, they reassessed the eye to validate original assay and sent me the results along with my eye. I sent the eye to my doctor that performed the genetic study as he was highly interested in completing his study. Conclusion as I mentioned above. A letter from my original doctors to my lawyer in 1976, while investigating the possibility of retrolental fibroplasia (excess oxygen during incubation at birth), stated there was no hospital malpractice as I had a very advanced case of retinoblastoma. Obviously and to today, I am very critical about the medical profession and ethics (or lack thereof). I would hope that with todays technology, as good as it is, a parent would still consider multiple opinions from multiple doctors before pursuing surgery. I am happy to be alive and giving up an eye to have that life is an equitable trade as I believe my doctor's main concern was to save me. What hurts is that honestly is sometimes not worth saving to some. Honestly is forgivable but deceit is perhaps another story. I prey your friend's child is doing well.

[John C Hagan III, MD, FACS, FAAO]

Hope they are successful in their efforts.

JCH MD

[nickppatel]

check this out regarding retinoblastoma:

http://www.click2houston.com/news/19010729/detail.html

[John C Hagan III, MD, FACS, FAAO]

Retinoblastoma is a malignant growth that can be fatal and not infrequently is bilateral. If the tumors are off to the side and not in the middle of the eye where the macula is the child could have almost normal vision for a while until it grew.  Remember also the child has no way of communicating visual difficulties nor has the infant brain an understanding of what's normal.

JCH MD

[KATE535]

JCH MD & OLDCOT -Thankyou for your kind words.

ny2125 - Yes they would. The eyes may look normal, can go unnoticed, it starts out small, so in a baby, the child would seem normal. Flash photography will bring it out but would be far less visible on a face to face basis. I believe blindness can occur later if retinoblastoma goes unnoticed.

[ny2125]

would a child w/retinoblastoma be able to see in the first place???  i would think that the baby would not follow an object with its eyes???  thanks for clarifying.

[John C Hagan III, MD, FACS, FAAO]

Amen.
JCH MD

[OLDCOT]

Kate,

I usually just lurk about here, but I couldn't help commenting on this (even though the dr has already said what needs saying).  

I will pray with you that this is not retinoblastoma, but if it is, please know you have likely saved this child's life.  I have worked in eye care for 20+ years, many of those in oculo-plastic and retinal practices, and I've only ever seen one case of retinoblastoma.  That case was caught by a pediatrician and referred to us for treatment.  This photo is amazing and your observation extraordinary.

Kudos to you for being brave enough to speak up, ask the right questions and then make the necessary call.  How blessed your friend is to have you.

[John C Hagan III, MD, FACS, FAAO]

Always hope in this situation that things turn out for the best.

JCH MD

[KATE535]

Thankyou, your concern is clear and so I have contacted her to inform her. I will keep you informed on what she does.

[John C Hagan III, MD, FACS, FAAO]

Kate: THIS IS AN EMERGENCY.

Please contact your friend immediately. It will be hard not to alarm her as those pictures are alarming. She needs to see a pediatric opthalmologist immediately. Only an in person exam can tell  for sure but that picture is alarming. It need not be a retinoblastoma but it could be, could be eye malformations, lens problems.

We have already found one child with retinoblastoma from pictures just like this.

Please give me some follow up.  Mom should call her peditrician for an immediate referral today. I know it will upset her and alarm her but some things are alarming.

You are a good friend for your concern.

JCH MD