Peter's Anomaly- an explaination

I see I got lots of hits on my post about Peter's Anomaly so I wanted to add some more info.

As you know my son has Peter's. Peter's Anomaly is a condition that children are born with. Basically their corneas (the covering of the eye, the windshield of the eye) is cloudy. There are various degrees of cloudiness. Sam was born with very cloudy corneas but they were not real thick.

It is genetic chromosomal in many cases. In some cases, it seems to be just a random thing. Currently the University of Wisconsin is doing FREE research into PA. please contact me if you'd like the info.

Our son has been in the research study for about a year and they have yet to find the marker for PA in his DNA. Because he totally presents with PA as well as Peter's Plus Syndrome, all are convinced that there is a marker in him that maybe different than with other people.

Some kids are born with both eyes affected like Sam and then it is call bi-lateral PA. Some are born with just one eye affected and it's called uni-lateral PA.

Many times the child with present with one or both eyes smaller than normal. This is called Microphthalmia. Both of Sam's eyes are smaller than normal with his left eye being much smaller than normal.

Anophthalmia is when one or both eyes did not develop. We've met some children who have had that condition.

Another part of Peter's is the frequency that the child develops glaucoma. Sam's has been kept in check by eye drops but it something that can happen to a child even if the child is never treated (for example with a transplant or implant)

Treatments...

Some families do nothing....I will not even get into my ideas on that!!!

Our plan was to treat aggressively and we did from day one.

When Sam was just 8 weeks old (only 2 weeks after his real due date) he had his right cornea transplanted. Then a few months later, he had his left eye done. The left eye began rejection within 6 weeks and we fought it for months with extra eye drops & frequent trips to Miami for him to be put under and received steroid shots directly into the eye itself. Nothing worked and we just left it alone for awhile.

By the time he was three his right eye had totally rejected, turning just as cloudy as it was when he was born.

Then our doctors told us about corneal IMPLANTS! Made from thin plastic, the implant is not rejected! So we took Sam to Dr Aquevella in Rochester NY for the procedure in August 2007 and now going on FIVE years, his eye is clear & he ia doing great.

He will never have 20/20 sight but his sight is functional and he plays, watched tv, walks without much assitance, runs in places he is familiar with. The implant was the best thing we ever did!!!!!!!

So if you are reading this and you have a child with PA, feel free to contact me. We did both procedures and I can promise you the implant is so much better than the transplants. I'm so thankful for the technology and of Dr A's skill ( and he is the most kindest man in the world!!)

I know I've made this so simple without a lot of detail but I see my one other post about PA gets so many hits, I felt I needed to explain a bit more.

BTW, we feel that Sarah the little girl we are adopting has PA and Dr A will be seeing her this summer and he is hopeful to be able to help her. We also felt that Seth has PA and Dr A was willing to try to help him also. His case looks more complicated but we have friends who adopted a little girl from China whose eyes looked just like Seth's and Dr A was able to operate and give her some sight!!! We've passed on all of Dr A's info to this family and hope that he will get seen by Dr A!

Again the picture above is Before and after Sam's implant surgery...WOW what a difference for him!!