Our journey with congenital ptosis...

Aidan was born with congenital ptosis, which caused us to seek medical advice, prayers and more informal information as soon as we found out it would be a problem. But as we researched, we couldn't find much information, even on the web, so we thought we would blog a bit about our experience with it - in hopes of helping someone else. :)

Congenital ptosis simply means a droopy eyelid, usually present at birth. The pediatrician thought it might have been due to the way he was positioned in the womb and that the droopiness would correct itself. But unforunately, it did not. So, we started consulting with a pediatric ophthalmologist, who recommended that we start patching his good eye at 3 months to prevent lazy eye and to help his brain develop connections to his "little eye". So, this poor kid was patched several hours a day almost every day started at 3 month til about a week ago. The patching was helpful and there was normal development of the "little eye" but his vision wasn't 20/20. The ophthalmologist started to be concerned about his vision and recommended surgery as soon as possible.

We then searched for a pediatric ophthalmologist who still performed ptosis surgery (ours didn't) and found one that came highly recommended and was in our insurance network. This surgeon recommended a levator resection, which basically means to shorten the eyelid muscle (the levator) by removing a section of the muscle so the lid would open higher. This surgery was completed shortly before Aidan turned one. Unfortunately, this did not raise the lid high enough and we had to continue with the patching and close monitoring by the other ophthalmologist.

After Aidan turned 2, the ophthalmologist was more concerned about Aidan's eyesight after diagnosing him with astigmatism, which she feels was caused by the increased pressure of the lid on the eye. She then recommended a 2nd operation. We had wanted to put off any further surgery because after a certain age, this type of operation can be done using local anesthesia vs. general anesthesia. But as we continued to watch Aidan have more difficulty seeing things (having to lift his chin to help him see or look to the side for more clarity), we decided to go ahead with another surgery, sooner rather than later.

By the time we decided on another surgery, we had already moved down to FL and we really questioned if we would be able to find a great surgeon, since we heard most of the eye specialists were concentrated in the Northeast. However, we finally found a surgeon who did fellowships in Ophthalmology, Pediatrics, and Plastics - making him the perfect candidate to be the surgeon for our son - Dr. Steven Gross in Palm Harbor, FL! Praise the Lord!! AND, he was also in-network. We felt so relieved! Anyhow, last Wednesday was the date of the 2nd surgery and it went really well. This time around, Aidan had the frontalis transposition done. This procedure basically takes the eyelid muscle and attaches it to his eye brow muscle so that he can lift the eyelid with his brow more effectively, while still allowing him to close his eyes when he wants to. [Another resection might have lifted his lid more but might have prevented him from closing his eyes, thereby causing dry eye issues.] He recovered quickly the day of the surgery - yay! [Getting a new train from the Thomas the Tank brand also helped.] The hardest part was preventing him from his usual antics (playing with this head on the ground, rolling around, etc) and not taking him to the playground (so he wouldn't get dirt in his incision). We've also had to patch his eye during naps and nighttime sleep to prevent him from touch the incision area. But Aidan was a real trooper - I'm so proud of him! :) We didn't take any pics the day of but took some Post-op Day #3 when we finally took him out of the house - you can see pic here. We're now praying for a quick and complete healing!

And as you can see, there aren't a whole lot of articles for parents of kids with ptosis that we could find. A lot of articles were comparing procedures or describing them but most of them were written using medical jargon. We hope reading our experience was helpful for someone else. If you need more info, feel free to email me - mama4jc@gmail.com! :)

***UPDATED POST HERE. :)