Yesterday Jeremy and Renee took her to a specialist and Maddie was diagnosed with congenital ptosis, which means the muscle that lifts the eyelid is non-existent or considerably under-developed, causing considerably droopy eyelids. Surgery is the only way to correct the condition but it is not a one-stop fix, rather it will be multiple surgeries over several years, as her body continues to grow. Just 1 in 10,000 babies are born with congenital ptosis and 75% of those babies have it in just one eye, so it's pretty rare for both eyes to be affected.
There is a real time issue here. Light is critical to the development of the infant eye. If you cover a baby's eye with patches for three months, they will be blind. Maddie is nearly seven weeks old, so you see, there are really just a few weeks in which to consult with surgeons and make the proper decisions; decisions which will affect Maddie for the rest of her life. You see, with surgery it is a permanent fix, she will not be able to blink or close her eyes, not even to sleep, at least that's what is being said now. The next step is to consult with specialist surgeon at the world renown Jules Stein Eye Institute at UCLA and proceed with surgery ASAP.
Apart from this, Maddie is a very healthy, sweet, mild little baby. She cries only when hungry, and does love to eat! Hey, she's a Dewey! From birth she's been so pretty with gorgeous porcelain-doll-like skin and such a pretty little mouth. Her eyes (which are fine, thankfully!) are a navy blue, we'd just like to be able to see them and have them see us!
So prayer requests would be:
* a prompt appointment and surgery date at UCLA
* wisdom, discernment, peace for Jeremy and Renee as they seek the best for Maddie
* Maddie's eyes would get enough light for their development
* a miracle, if that's in God's plan, for the situation to correct itself
* may God, and only God, be glorified through all of this
Please share this request with any of your Bible study groups, small groups, family and friends. You may use the attached photos and any of the text. It's so hard on this grandma to be so far away, if only I could rush to California today! - but I know the power of prayer is far greater than anything I can do. May God's plans for Maddie prevail!
Again, I turn to Proverbs 3:5-6...
"Trust in the Lord with all your heart, and lean not on your own understanding, in all your ways acknowledge Him and He shall direct your paths."
Praying for you and Rich, Jeremy and Renee, and precious little Maddie. May God bring healing, comfort, and guidance.
ReplyDeleteMarilyn R
Thank you for sharing this story of your granddaughter, Maddie. She is a beautiful precious girl! My daughter was also born with ptosis, quite severe. We took her to surgeons who said they could do the sling surgery for her, but we opted to wait until later in life because she was growing and her face would be growing. Therefore, she would need to have multiple surgeries. Tomorrow, Feb. 8, she will be five! And she has not had one surgery yet. She cocks her head back to see, her vision is amazing, she doesn't use her eyebrows to lift her lids to see. She has low muscle tone in her entire body, and the levator muscle is non-existent in her eyes. Many people think she is sleeping and can't see. We are struggling to do surgery now and to find the best for her. We know it may help her see a bit more, 1-2mm more opening, but cosmetically it will change her look. It is a struggle to know what is the right thing to do. Time will tell you, please take that time and don't rush. If you do surgery too soon it will also mean another one before the age of 5 because of growth. So please consult and research, and continue to have faith. Thank you again for sharing your info. julijust@yahoo.com
ReplyDeleteHello, I was born with congenital ptosis of both eyes, and my levator muscles were very weak, so I always have raised my eyebrows to open my eyes. When I was younger before the surgery at the age of 4 I tilted my head back to see. It also causes poor blinking reflexes and I am extremely sensitive to light. About 6 years ago, I had surgery to raise my lids, and what a tremendous blessing that was, because I virtually had no peripheral vision and once the surgery was done, I was amazed! It has been a lifelong struggle, but your granddaughter will get used to it...the way I view life with ptosis is at least I can see, and that is a blessing! Thanks for sharing your granddaughter's story.
ReplyDeleteDear Carolyn,
ReplyDelete7 weekes ago I got my daughter Carlie and she has a ptosis on one eye...till now we haven't seen a specialist yet...but I was wondering what your situation is right now...mor than one year after your post...
Maybe you'll give an update...I'd be thankful....
Your post gives me hope...
Love from germany...
Jenni
jenni.prucha'at'web.de