Philadelphia-Is it Feasable?


I spent almost an hour on the phone this morning with the nurse practitioner that works with a Pediatric Ophthalmologist and a Pediatric Oculo Plastic Surgeon at Children’s Hospital of Philadelphia (CHOP).

Instead of using conformers, he uses hydrogel implants to expand the eye socket. They basically do the same thing as conformers which keep the eye socket growing, stretch the eyelid, and keep the structure of the face growing correctly. From what I can gather, conformers have been around for quite a long time now and hydrogel implants are a newer technology. He has been using them for about 5 years now and has used this process on around 50 patients so far.

He basically pops one of these pea sized implants into the eye socket and then glues the eyelid shut (yes, glues it shut with crazy glue). The implant then absorbs all the moisture it can and expands. The glue eventually wears off and the eyelid opens again. At this point, the implant has expanded to the point where it is bigger than the eye opening and so it doesn’t fall out. There is no surgery, no sedation, or anesthetic required. He changes the implant every few weeks to a larger size.

My understanding is that toward the end of the process, the doctor does a dermis fat graft. This is where he takes a lump of fat from the baby’s bottom and attaches this to whatever muscles or tissue that the baby has in his/her eye. This obviously requires surgery in the OR. An ocularist then makes the prosthesis which I believe sits on top of the fat implant.

So, the question now is, “Is this the best option for Faith and is it feasable?”

Mike and I are seriously considering go to Philadelphia with Faith for a consultation. We know that this could be a major financial burden due to the location. Travel could be very expensive. Airfare would be the big expense since it seems like the drive would be way too far to do repeatedly with Faith.

We are going to talk to him to get an idea of how often Faith would need to be there for treatment. This will help us determine if it is even feasable. It could be 5-10 times or more a year that she would need to go there. We are also going to find out if there is a pediatric oculo plastic surgeon closer to us that could help us out between visits to Philadelphia and maybe even help cut-down on the amount of trips we would have to make to CHOP.

I know it seems crazy to think that we might go all the way to Philadelphia to get treatment for Faith. However, we have known from the start that Philadelphia is where so much is happening in terms of A/M. The Albert Einstein Medical Center is located there and is conducting the research project on A/M. CHOP is working collaboratively with AEMC.

We have lots to think about and more research to do. Please pray that we make the right decisions and put Faith in the right hands for treatment.

As always, keeping the Faith!