Lanes Vision Journey
(Congenital Bilateral Cataracts)
Lane right after his 2nd surgery.  He was 8 weeks old here.
Lane was born with Cataracts in both eyes.  We first found out about this when, Lane was five weeks old, my husband noticed what appeared to be a piece of tissue in his left pupil.  We took Lane into our family physician the following day and were immediately referred to a Pediatric Optomologist.  Not long after our arrival at the PO's, they dilated both of Lanes eyes, and upon examination, realized that he not only had a cataract in the eye that was visible to the naked eye, but also had a very dense cataract in his right eye as well.  This cataract could only be seen while the eye was dilated.

At this time I was a emotional basket case, immediately thinking the worse.  That my baby was going to be blind.  My thoughts were running wild.  Dr. Rao explained to me that with a baby, their eyes do not complete their formation until a baby is two months of age and don't finish growing until the age of two years.  The eye starts forming in the womb, but it isn't until the eye is actually seeing that the eyes and the brain connect and finish the process.  If the eye cannot see during this crucial period of time, the brain ignores the eyes all together and blindness will occur.  So in essence what he was explaining to me was that we were very fortunate to have caught this early, and that a lensectomy needed to be done in both eyes, and with contact lens correction, Lane would develop vision.

Lane had his first surgery at 5 weeks, and his second at 8 weeks. The hardest part for me, other than the initial diagnosis, was letting this new little life of mine go off in the arms of the anesthesiaologist.  That letting go, and my fear of the surgery itself, was quite overwelming.

The surgery itself took a little less than a half and hour.  The waking up is what took a bit of time.  It was all so scarey.  Lane came out of surgery with gauge covering his eye, and a little eye gaurd edged in blue. He had trouble swallowing due to the tube being down his throat.  We were told to leave the eye alone until he saw the doctor the next day for a recheck.  The next day Dr. Rao removed the gauge and took a good look at the eye to make sure that it wasn't leaking any fluid, replaced the gaurd, and sent us home with eyedrops to keep the pupil dilated and a antibiotic type ointment to put in his eye every couple of hours.  Lane kept his gaurd on until we went back for his second surgery, and then everything switched to the other eye, and a contact was inserted into the first eye.  Lane lit up like a lightbulb.  He could see!  It was so exciting.  Two weeks later he got his contact for the other eye and he was in business!  I just couldn't get over how observant he became immediately.  It was like he wanted to take it all in at once. 

Lane was approximately 5 months old in this picture.  Notice how he is making direct eye contact with me.
This is another picture that shows how alert and focusing Lane became within a few months of his lensectomies.  Notice how his right eye turns in just a bit.
Lane has done remarkably well.  He wears the Silsoft extended wear contact lenses and they only need to be taken out and cleaned every two weeks.  We do have our struggles with him rubbing one or the other out on occasion, and we have lost a few, but other than that all is now well.  He sees his PO on a regular basis for strength and base curve adjustments, and for overall eye exams to make sure that no secondary problems have cropped up, such as glaucoma. Lanes right eye is a bit weaker than his left, so we patch his left eye for one hour, three days a week.  But other than this we have been very blessed in that department. 

We have had a few development delays in the gross motor skills area, but we are not certain if this has anything to do with Lanes vision issues or not.  We can only question at this point, until he is able to read a eye chart, and communicate with us.  We have noticed that Lane is very auditory, and we feel that he learned to compensate in the first couple of months of life.  But other than the gross motor skill delays, he is a normal healthy baby, with lots and lots of energy. After the age of two, when his eyes are finished growing, we will consider implants.  Until then we will continue with his contacts.  The contacts in and of themselves can be very challenging.  It is a matter of holding Lane down, while he is crying and trying to get free, prying his eye open and removing or inserting the lens.  It is not a pleasant chore, but I know that I am doing what is best for my babe in the bigger scheme of things.  I have heard of mothers who refuse to go through this process or the process of patching, because it is too upsetting for their babe, all I can say to this is to please, please, be strong for your little one so that he or she can have the best vision possible when grown.  You do not want to have to answer the tough questions from your child, such as,  why they can't get a drivers license, when all of their friends are.  We only have a short period of time in which to help our little ones, and unfortunately it is way before they have the ability to make their own decisions. 

Our insurance company, Cigna, continues to deny our medical claims for Lanes contacts, as they continue to look at his contacts as  cosmetic, in lieu of the prostetic(durable medical equipment) that they are.  We will continue fighting this injustice, until our babies vision is put before the almighty dollar. But it is too bad that this type of hardship is put on families who are already dealing with such hard issues. (update) Cigna has finally started paying for lanes lenses, after a long fought out battle by us.

The best advice I can give to a new mother and father is to make sure that your doctor gives your baby a thorough eye exam at birth and shortly after.  Make sure that your doctor CAN TELL YOU that he/she saw a red reflex.  Catching this problem within the first two months of life is so crucial.


      
Lane is now a active two year old.  He limits himself in climbing, and is leary of new textures, but other than that he can do everything a child born without cataracts can do.  In this picture he is wearing a non perscription pair of glasses, for protective purposes only.  His contact lenses still provide him with vision.
God bless you,
Lanes Mommy
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