6 answers

Does Your Child Have Congenital Ptosis

My 1 (13mnths) year old princess has been diagnosed with Congenital Ptosis. I am told that this is because the Levator muscle in her eye lid never developed. Causing her not to be able to lift her eye lids. In 85% of the children who suffer from this, it only happens to one eye. For my daughter it is both eyes. Causing a severe head tilt so she can see and now causing her a delay in development. At 10 months she tried to start walking, but the head tilt began to become a problem. She gets very upset about not being able to walk, so we have gotten her a walker to try and keep her from running into objects and hurting her head even more.

I am told (and have researched high and low) that the ONLY thing that can be done to help her is 2 surgeries. One in March where they will attach a Nylon stitch to the top of her eyelid at her eyebrow so that she can use her eyebrow to lift her eyelid up. Then another when she is 4 taking tissue out of her thigh and attaching it to her eyelid.

What concerns me is several things. First, and this may sound selfish, my family history is in the almond shape eyes we have. My daughter even has the shape. Will that be taken away with this surgery? Second is that the specialist said she will "Never be able to close her eyes again, not even when she is asleep." Doesn't the eye need to shut to regain its moisture? If it does not close than her cornea will dry out.

I understand that if I do nothing that she will loose her eyesight, have to deal with spine and neck problems, and be delayed in her development.

I guess I am looking for someone with advise. Someone who has been through it or is going through something like it.

Mama Jenn Step mother to Nick-15 Christian-14 Mother to Taylor-1 Austin-6 & Bryce-8

What can I do next?

So What Happened?™

First I want to say THANK YOU to everyone who responded! Taylor had surgery March 23. She did awesome an that night was back to herself. On the day of surgery I had a mothedealing with the same sort of issues in my mind. asked the doctor to confirm for me why we needed to do the surgery and these are the major points as to why we chose this temporary surgery were: - They say Taylor was rare in her "compensation techniques" (i.e.. Head tilt and when she turned 1 she actually began to lift her eyelids herself with her thumb to see things), and that is why her eyesight has not been damaged yet.
2. Concern of neck, spine and other damage done to her body by her overcompensation for her eye sight.
3. Knowing that this is a "temporary surgery" because they have only found the stitch to last 3 - 5 years.... it is best to have it done now while she is young, healthy and able to bounce back so much more than a older child.
4. If there is a problem "cosmetically" then they can fix it when they do the permanent surgery when she is 4 - 5, using her own facia tissue from her hip.
5. He felt it was better to have it done now because you can correct the problem quicker as oppose to later when she is 4 - 5 and it is harder to break habits!

Currently when Taylor sleeps, her eyes do not fully shut. Because her muscles do not work properly in her eyes, she does not currently have the "natural reaction" to roll her eyes up into her eyelids while sleeping. As of yet... (4 days after surgery) her eyes have not gotten dry. As far a her eye shape, we have not noticed too much of a change except that you can now see her beautiful sky blue eyes. She is like a 14 month old baby with newborn eyes. She loves being able to see and is so animated about it. She has already figured out how to use her cheeks to shut her eyes and is all over the place at home!
I am so greatful to all of you fo responding and encouraging me to seek the best for my princess. We are so thankful that will made the choice for her now instead of waiting any longer. She is like a completly different child. WOW!

More Answers

Jeanetta,
Although our situation was very different, (my daughter was born with cross eyes and it never became normal)She had surgery at 6 months old. the hospital we chose was excellent. Please check out Wills Eye Hospital in Philadelphia. It is the best around. Always get second and third opinions. It is scary when it's your baby. Please let us know how it goes.
Blessings,
A.

Hello!

As a baby I was diagnosed with congenital ptosis in both eyes. I got my first surgery when I was 4 and that helped tremendously. It is true that my eyelids do not close all the way when I am sleeping and that does cause them to dry out a bit. I do use eye drops on a regular basis. Now that I am 27, I will be getting my second surgery on June 16th. I have always had almond shaped eyes and my first surgery didnt alter that, so I am confident that this next one wont either. I am quite excited to see the results. I will update everyone on how it looks!! Thank you!

My son (12months) just had surgery for ptosis and I have had a similar experience to that of Heather. The surgery just happened in December 2006 and already he is closing his eye most of the time. We use the ointment only to make sure it does not dry out. There is still minimal swelling and we can see where the incisions and stitching were, but most people can't even tell and this will fade over time. I keep thinking about how long it took my c-section to fade:)

As for the shape of your daughter's eye, it's not so much the shape of the eye that is changed as the height of the lid. Also, the surgeon should take a number of pictures before surgery to determine where to make the incision and how high to make the lid to make the eye look natural.

Our surgeon said that he will have to have surgery again before kindergarten using the tendons from the thigh. This is the only way to make the procedure permanent because the nylon is new invention (past 5 years) and they are unsure of how long it will last.

I think it was much more stressful on my husband and myself than it was on our son. He slept a lot after surgery and then the next day acted like nothing happened. Also, you should be prepared for after surgery. My son was a preemie and spent time in the NICU so I was used to all the monitors and things hooked to him, but wouldn't have been ready for that at all if I had not gone through it before. His face was also super swollen because of all the fluids and I think he weighted like 5 more pounds.

But let me tell you, within a week after the surgery he was crawling around, pulling up on things, and doing lots of things developmentally he had never done before. The developmentalist said we would probably see a whole new child, but I didn't know it would happen so fast. I feel that the surgery was completely worth it.

I would just make sure that you have a surgeon you trust and feel is reliable. We had the surgery done at CHOP by one of the top pediatric opthamologists in the country. He literally wrote the book on childhood ptosis.

Where are you having the surgery? If you have other questions or want to see pictures, let me know.

Good luck.

I have not experienced this myself, but have worked with children with rare disorders in the past. You may check with the doctor's staff to see if there is a parent he's worked with that may be willing to talk to you. May God bless and protect your family.

I think you should get a second opinion just for peace of mind. Then you need to write down all of your questions that you have including whwat you just posted.
As a mom of a special needs child, I have found that asking the professional first, always gets to the root of the problem.
You have a right to feel selfish. I too get selfish with having NO time due to the fact my child has issues and I run around all the time.

Good Luck
N.

My son had ptosis in both eyes also. The doctor was very concerned about his head posturing and so he had surgery to correct it in April 2006 just before his second birthday. I'm not really sure I understand what the second surgery you mentioned is for.

If you decide on a second opinion, my son's Dr. is wonderful. I don't know where you live, but it may be worth a drive if you are close enough to Erie.

I'll try to answer as many questions as I can and I can email you pictures of my son before and after the surgery if you are interested in seeing them. Anyway, the surgery took about 45 minutes and went so well. You really need to prepare yourself for how your daughter will look immediately after the surgery. The best way to describe it is a really surprised look. Her eyes will be open very wide and she will not be able to close them. My son recovered very quickly, he was running around and playing like nothing happened that night.

You will have to put ointment in her eyes and on the incisions a few times a day for a couple of weeks. You can buy the ointment at any drugstore and we still use it occasionally when Josh's eyes get dried out. It was a few of weeks before he started to sleep with his eyes closed again, (mostly closed anyway). They close a little more everyday for the first couple of weeks after the surgery. My son still sleeps with his one eye open, but only a sliver. The crease in his eyelids gets a little red and irritated occasionally so we just put some of the ointment on his eyes at bedtime and the redness is usually gone by morning. Other than that we have had no problems at all. You can't even see the scars anymore and he has very fair skin.

Josh was a preemie so his development was behind already, but the surgery made a huge difference. He could see things he couldn't see before, he speech really took off, and you could tell his balance and motor skills really improved.

I hope I answered at least some of your questions. Feel free to ask anything and I can send those pictures if you want.

H.

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