Congenital Ptosis

I wanted to take a minute to share some information with my readers about something called Congenital Ptosis. Our 1 year old son was born with congenital ptosis (in some cases it can be corrected by strengthening the muscle by patching the normal eye to force use of the other one, which we did try for about 6 months)  at 8 months old he had surgery to repair it, unfortunatley the surgery didn't work and yesterday he had the surgery done for a second time.

Congenital Ptosis is a condition in which a drooping eyelid is present,it is called ptosis or blepharoptosis. In ptosis, the upper eyelid falls to a position that is lower than normal. In severe cases of ptosis, the drooping eyelid can cover part or all of the pupil and interfere with vision, resulting in amblyopia. If surgery is not performed early in life for a patient with severe congenital ptosis, the brain will shut down the area that should be recieving visual stimuli for that eye, and the child will become blind in that eye. Our sons case was very severe and they noticed it right at birth, after a few months of monitoring we were reffered to a specialist, and then to an eye surgeon who has done this surgery on thousands of patients.

What exactly is ptosis??
The eyelids are elevated by the contraction of the levator palpebrae superioris.
In most cases of congenital ptosis, a droopy eyelid results from a localized myogenic dysgenesis. Rather than normal muscle fibers, fibrous and adipose tissues are present in the muscle belly, diminishing the ability of the levator to contract and relax. Therefore, the condition is commonly called congenital myogenic ptosis.
Congenital ptosis can also occur when the innervation to the levator is interrupted through neurologic or neuromuscular junction dysfunction

The surgery our son had to fix his ptosis is described below it is a link from Medscape:

Frontalis suspension procedure

This procedure is designed to augment the patient's lid elevation through brow elevation. Frontalis suspension procedures produce lagophthalmos in most cases. Some surgeons prefer to perform a bilateral suspension procedure for severe unilateral congenital ptosis to obtain symmetry.
The procedure is indicated when the levator function is less than 4 mm.
Relative contraindications are poor Bell phenomenon (limited elevation of the eye), reduced corneal sensitivity, or poor tear production, which can produce exposure keratopathy. If surgery is still indicated, these patients need close postoperative follow-up care to avoid corneal exposure, infection, corneal ulcer and amblyopia.
Several materials are available to secure the lids to the frontalis muscles.^{[10, 11, 12, 13]} These materials include the following:

• Autogenous fascia lata: Autogenous fascia lata can be obtained from the leg of patients older than 3 years.
• Preserved (tissue bank) fascia lata
• Nonabsorbable suture material (eg, 2-0 Prolene, Nylon (Supramid) or Mersilene)
• Silicone bands, silicone rods
• ePTFE (expanded Poly Tetra Fluoro Ethylene), Gore-Tex
• Autogenous materials used less frequently include palmaris longus tendon and temporalis fascia.

Patients may not be able to close their eyelids during sleep from a few weeks to several months following surgery. Families must be warned of this outcome before the operation. The problem of open lids during sleep improves with time; however, aggressive lubrication is needed to avoid exposure keratopathy.

Thankfully, our son is resting now and should heal up pretty quickly. He looks pretty miserable with his eye swollen and black and blue but we are really hoping for great results this time and it is to save his vision. Unfortunately, his specialist is over an hour away and the surgeon is 3 hours away so for us this has meant a lot of time spent traveling to the doctors, and this will continue now that he had the second surgery. We are very thankful that it was discovered early on and that all of our son's doctors have been so willing to see him and make sure he is seeing the right doctors and getting him in for surgery quickly, both times.

Do you have experience with Congenital Ptosis? Other issues related to the eye? I'd love to hear your experiences! Please post a comment on my blog.