Where to start?!
So, we left home at 9ish yesterday morning, loaded up with snacks, drinks and movies. Emma was as happy as a pig in mud! The drive was slated to take 3 hours, to Garden City, Long Island NY. Due to me trying to take a picture with my phone, we missed our exit off the Verrazano bridge and ended up driving about an hour extra around Brooklyn, but getting stunning views off Manhattan.
I kept pointing out the Statue of Liberty to Emma, who would take a cursory glance away from Sleeping Beauty,declare she couldn't see it and "knows what it looks like"! I gave up!
When we arrived at the office (45 minutes early - yes, I built in a huge buffer!) I started to get nervous. It felt strange, not the same as the familiar Children's Hospital that we are used to. I wondered if we had made a big (expensive) mistake! The staff were very friendly, and Emma was happy to get her hands on my iPad (priceless, really!).
The time came for us to go back to a room. It was all becoming very real! The doctor arrived and he was very professional, but friendly. He took a couple of pictures of Emma and then took us to his office to discuss the procedure in detail.
Let me pause here and mention two things: first, of course Emma needed a drink, how did I fail to bring one in! Such a rookie mistake. Second, in my 7 years of doctors visits I think the only times we have had meetings with doctors (as opposed to an exam room) is when we were told Emma had gastroschisis, and when we met the doctors at Children's and they gave us a rather gloomy prognosis. That's not to say this had a bad omen, but that to me, this is a move that denotes respect, a commitment to really talk, not just answer whatever questions you can throw out in a short time. I was put more at ease.
Dr. S. Proceeded to talk first about facial paralysis and Moebius in general, setting a foundation in case we weren't as schooled as we needed to be - and used a book. One with paper and diagrams! Old school, it liked it!
Then we got into pictures. He has only done the procedure on 4 people with Moebius. "Only" is not really fair - for such a rare condition, that's pretty high! Plus, this procedure (temporalis muscle transfer) is not widely done anymore, which is a shame because it seems to fit the bill for smile surgery perfectly.
Several pictures were of people with only one side of their face paralysed, and many had full eye movement also, but it was informative. But the pictures of the individuals with Moebius had dramatic results. Not only was the smile pretty natural looking, but the new position of the muscle, laying over the cheek bone, creates a contour and definition that is otherwise missing with Moebius due to muscle atrophy.
We mentioned the problems that the little boy in Norway had and the doctor had some very plausible explanations for why that might happen with certain techniques for the procedure (he can't say for sure because he has no idea on the specifics), but was able to reassure us that it has never happened for any of his patients and why that is the case.
We asked about Emma's age, since the youngest person he had done it on was 8 and he seemed cautious but also mentioned that even if she was uncooperative with the exercises, the ability to cause a smile would still exist when she bites down, so it's actually not a big concern. However I feel confident she will do it!
We discussed when he could do it and he is available all summer, if we choose to proceed now, or whenever we do. The main issue there is getting the insurance companies to move quick enough, because I would be aiming for early August, so that healing can be in progress before first grade.
Scarring was minimal after time, and even enhances the definition of the smile. She would require a one night hospital stay and the only restriction on food would not be chewing as much as no big biting for a few days.
She would probably need the muscle to be tightened after a few years, which is not nearly as complex as the initial procedure.
Also, at some point, because she can not fully close her eyes intentionally (did you know your eyelids are a sphincter muscle? A circular closure that pulls the upper and lower lids in. I didn't! Apparently with Moebius it is not as strong so the lower lid does not move as fully.) she will need gold weights put in her top lid to weigh them down and a sling in the lower lid to help it stay up. Since she is so young there's no drooping yet, so I don't think we would get that done at this point.
The doctor was very conscious of not wanting to freak Emma out and waited until she was suitably distracted with a game to show us the graphic pictures of the procedure! She did frustrate me at one point asking if we could leave. I asked her if she wanted to have the surgery to help her smile. She answered that she did, and I told her that if so, she needed to sit up and stop whining - which she did!
When we left the office I asked her in the elevator what she thought. She said "can he do it? I wasn't listening!"
So, yes, he can and will do it, if we decide to proceed. We chatted a bit on the drive home (which was decidedly quicker as we took the right road! 3 hours over rush hour is not bad) and both felt positive, but have to really talk about it. And pray about it.
And then, like many things in life, it comes down to money! I know people are uncomfortable discussing it, but it really is a factor for us. We will have to navigate the insurance options which will require the equivalent of a masters degree in medicine and legal negotiation! Then there's the extra expenses. Yesterday was easily $450 all in. Perhaps if we'd been planning this all along we would have saved (perhaps not) but we weren't! We planned to wait on Emma, we just didn't expect her to make a call so early! However, people waste tons of money on far more frivolous things than this, so we will likely overlook it. We may even start a fundraising account for anyone who would like to help!
Feel free to comment with any questions, and I'll keep you posted. This could be a life- changing summer after all!
