So first, we paid a visit to the Fundacion Gantz (www.gantz.cl), which is the cleft/facial deformity foundation here in chile. They operate as a non-profit in Santiago and work with the Smile Train foundation in the US. Overall, it was an excellent visit and we left feeling well taken care of and confident in the treatment and care little Camilo will receive. But walking into the clinic was a bit overwhelming for both Joan and I. No one has actual appointments, so it was sort of a free for all of babies, kids, parents, and even adults there for treatment. Looking past the chaos, then we were sort of hit in the face with a huge diversity of clefts and other facial malformations. Most obvious were all the little babies with their precious little faces all taped up. Then we started to notice the handful of adults in the room that - I'm sorry, there's just no nice way of putting this - had some rather disfigured faces. Joan and I sat down as quickly as possible, where we then commenced crying softly together. It was just overwhelming! But soon we got a hold of ourselves and noticing a few more things... those "poor little babies" were perfectly normal and happy little babies, non of whom seemed to notice then had tape keeping their clefts closed or their nostrils open. Also they were a lot of older kids too, kids we hadn't noticed right away because there was nothing obvious to draw your attention. At very close inspection, we saw lots of tiny little white scars where their clefts had been - but we really had to stare and get quite close! And we also quickly realized, that of the adults that were there, they were probably here at the foundation NOW because they did not received proper treatment when they were younger. So we quickly wiped our tears away and did what normal expecting parents do - we checked out everybody else's baby gear!
Soon after, they called "Camilo Escobar" into the consult room. We marched in with our most recent ultrasound photos and met Dr. Monasterio, the man (and plastic surgeon) that got the foundation running almost 30 years ago. We had heard conflicting reports of his general demeanor, but we liked him a lot! Right away he made us feel welcome, talked to us as fellow biologists, and gave us a no-nonsense overview of the care and surgeries we will see in the future. But it turns out he is also a silly old coot, he chatted us up about his dreams to culture rock shrimp and even sat me down with a manuscript he's trying to publish to correct the English grammar!
Then we had a tour of the whole facility, which includes the operating and recovery suites, specialist offices, and play areas for the kids, with the head nurse - who was also a wonderful woman. She answered so many of our questions graciously and openly, and never once made us feel that she was in a hurry or that we were wasting her time. We also met with a staff psychologist (who checked to make sure we are handling everything fine) and with an education/outreach woman. With the latter we learned how to activate special benefits of our health insurance to cover most of the costs at the foundation (surgeries will cost us only about $200 out of pocket!) and that as soon as Camilo is born, they send a volunteer to our hospital to help us with doctors and nurses, feeding little Camilo, and to give us a general appraisal of the cleft. All in all, we left the foundation feeling like this is all very "doable" and that we will have all the help we will ever need!
As a side note, I was also EXTREMELY pleased with the pre-surgery treatment approach at the foundation. Basically, right after babies are born, their little faces are still extremely elastic. Many cleft teams and surgeons use those first few months before the first surgery to "mold" the face into what will be its final position. In addition to making the surgeries a bit easier, most pre-surgical molding techniques have the added benefit of actually CLOSING the clefts! In the past, many cleft teams have used either surgically placed or removable dental prostheses, that go into the roof of the mouth (over the cleft in the palate) and the with the help of weekly "adjustments," the gap starts to close. These have been shown to work quite well, but are frankly a pain in the ass for family and baby! Babies like to spit out these "retainers" so have they have to be glued or taped in. Also they have to be cleaned and sterilized after every feeding! These also mean weekly visits to an orthodontist for adjustments, and some babies get blisters and sores or have problems feeding from having these things in their mouths! But the GREAT news is that Dr. Monasterio has done a study (this is the manuscript I helped him a bit with) that has shown that with tape alone, you get the same pre-surgical result as with the a dental prosthesis! This isn't any tape, mind you, but a special tape called Dynacleft that was developed exactly for the purposed of molding clefts together. Here is a photo from Monasterio's study (also the cleft is very similar to what we expect to see with Camilo):
The photos show first the baby as it was born, what the taping treatment looks like, what the pre-surigical molding result is, the actual change in cleft width, and then the post-surgery repair. Pretty amazing, right? After the first surgery (when he's about 3 months old), where they will repair the mouth muscles, close the lip, and shore up the collapsed nostril, there will be no further taping or treatment. The newly closed lip and repaired muscle will do the job of the tape and continue to "mold" the cleft in the palate closer and closer together. Then when he's about 1 year old, they'll close the palate, but outwardly, he'll look like a "normal" baby after that first surgery!
If you are as amazed as I am about how well some of these surgeries go, here is a gallery of before and after cleft surgeries (a different foundation in the UK):
http://www.clapa.com/medical/surgery_photos/
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