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Our fourth (and last) baby, Jack Edison, was born with some congenital birth defects that are extremely rare. There is very, very little published online about Jack's condition, so I am attempting to find the time (ha) and venue for getting his story out. My goal is for the new mom (who is frantically scouring the internet to find some hope and information) with a microphthalmic child to see this blog and find some much needed peace.I will try and make this MUCH better when I get some more time, but for now, let me give you a very brief (and probably not too medically accurate) synopsis of Jack's life thus far.
He was born May 26, 2006, and quickly given a clean bill of health. I noticed right away that one of his eyes did not look right to me. I held him in my arms, and just kept staring at his eyes. One had a mis-shapen pupil, and looked much smaller than the other. The next time a nurse came in, I showed her. From that point on, it was a whirlwind of action. Doctor after doctor came in to see Jack, offering their advice, but most not knowing what was truly wrong with him. I was nervous, heartbroken, scared for him, and worried about telling people about it. I was so in love with my new baby boy, and wanted to do everything in my power to "fix" what was wrong...
The diagnosis: Complex Microphthalmos -- microphthalmia ("small eye"), pupil "keyhole" coloboma (incompletion of formation), severe posterior coloboma (a second incompletion in the back of his eye), and a large orbital cyst, which was actually connected to his eye. After quite some time, we learned that he was indeed completely blind in his left eye.
We ended up seeing several specialists, even travelling to the great Dr. Trese in Detroit to have an operation to restore vision to Jack's eye. We ended up staying in a hotel for about a week, awaiting his surgery. Only when they got him put under, did they discover he was not a candidate, and nothing could be done to help him to see again. We were told to go the prosthetic route, and thus began our journey with Jack's eye prosthetic/conformer/scleral shell.
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For those of you who are facing going through something like this, I am going to tell you something different from most of what you'll read on any micro/anaphthalmia website where people post their stories. IT IS NOT THAT BAD. Truly, Jack has been through so much poking and prodding, fittings and moldings, and subsequent genetic testing. He is the most lovely, well-adjusted, and full of life child. I adore every minute that I have with him, and his siblings think he is the greatest thing that ever walked the earth.
I was blessed with four children who were not born "perfect", and Jack is the only one with a physical "deformation". You laugh, but I am serious. Your outlook, your attitude, how you treat your baby (and his siblings), and above all, Who you put your faith in, is going to determine your family life. My God knew exactly what He was doing when he gave me Jack Jack. And having a little eye is just another little adventure we embark on as a family.
Jack was also born with hypospadias, which was corrected in January of this year. He healed beautifully. The renal specialists are monitoring his kidneys, as one is smaller than the other, but nothing has come of that. His head and orbital sockets are looking better all the time (as these grow according to your eye growth), and he is the most handsome (not so little) guy. We have checked several of his specialists off of our list, his doctor appointments are less frequent, and we are spending much less time in offices and waiting rooms!
God is teaching me so much throughout this process, and when and if Genetics discovers any sort of "disorder" that Jack has, I am prepared. It is all written in the plan of Jack's life. We are all sitting in the Almighty Palm of His Hand anyway, and what safer place to be than there?? There isn't anything my God doesn't know already, no surprises to Him! Sure, we've been thrown for a loop here or there, but our family is all that much stronger because of it all...
I am going to post pictures and video of the prosthetic process, as we just had it all done for the second time today (Jack just turned 15 months old.)
Okay, so, in layman's terms, here "Doctor Susan" (Jack's ocularist) is squirting the liquid in to his eye. It goops all out around his eye, but is forming, and hardening, around his eye, to create a form.
Here is the shell before Susan painted it. The kids thought Jack looked pretty silly here!
Here Susan paints Jack's new eye to match his natural one.
VERY COOL!!
Pretty great, huh?
This video is a bit disturbing, as Jack had to have his
mold made precisely at nap time. When he had it done as a baby, he didn't even stir... I wouldn't post this one, but it is interesting how the form is made... And believe me, a couple of minutes later he was playing with his brother and sisters happily....
Eeeewww!! It's kinda fun to play with fake eyes!!This is a picture of Jack with his previous scleral shell, and wearing his first pair of glasses. Unilaterally-sighted children wear glasses to protect their natural eye. There is no prescription in either lens, and we have no reason to believe he needs one, at this point. Doesn't he look like a baby Harry Potter?
Here is Jack when he was younger, in his first painted prosthesis. He is snuggling with my Mammaw (his Great Mammaw, Alice.) Aren't they just precious?
