Liam- Bilateral Congenital Cateracts

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Liam was born in 2011 with bilateral congenital cataracts.  His diagnosis was made on his second day of life. The pediatrician was unable to get a red reflex in his eye (this indicated that she was unable to see the back of the eye). I will never forget the words “I’m concerned.” By this point, we thought we were home free as this was the third pediatrician to look at him (the other 2 had not noticed any problems). I had specifically asked each doctor who examined my son to check his eyes for cataracts. My husband was born with congenital cataracts as well as his mother and grandmother. So, I knew to look for them.  This point was a major low for us. My husband had this overwhelming feeling of guilt for passing on the cataracts and I couldn’t help but wonder how this little baby would bond to his mother…he could not see me. Upon discharge from the hospital we were escorted to the pediatric ophthalmology clinic. We met my son’s amazing doctor and we were given a plan for treatment.

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Liam had surgery at 5 and 6 weeks old to remove the cataracts. He then started wearing silsoft contact lenses. The contacts proved to be quite a challenge for our family.  Every time they needed to be cleaned, the anxiety of not knowing how long it would take me to get them back in, or would he just loose one. A lost contact resulted in not getting a new one for more than a week. After a few months, the constant checking to make sure the contacts were still in place became second nature. The contacts continue to be a wrestling match to get back in to this day. I am grateful that Liam has not had the complications that seem to plague so many others. No signs of glaucoma, nystagmus, or strabismus. To look at my son, you would have no outward signs of his visual challenges. He does not let anything hold him back and seems to have pretty good vision with his contacts.

Liam is about to celebrate his second birthday.  Next month he is going to have bilateral intraocular lenses placed and he will then go into glasses. I am excited to order the shirt and cape “my glasses give me super powers.” My plan is for him to wear this on the day he gets his glasses. I see this as a positive thing, and I want him to see it that way too. We can hope that with products like this to educate the public, our children will be accepted as they should be…normal!


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