Hi, everyone, here's an overdue update on things. Two big doctors' appointments and a decision in the end. Enjoy the reading...:)
The other week my husband and I went for our PGD consult at an IVF clinic in the area. We met with their PGD specialist who was kind and also brutally honest. He gave us the worst-case scenario and told us that going through an IVF cycle for PGD could possibly end up with no embryos free of SCS, or maybe only one or two. If it worked, and we wanted a second child, there was the high chance we'd have to do IVF again. But there's always the possibility of TWINS when you do this sort of thing, too (and I'm a very small person, this is a kinda concept!). But the staff were great and reassuring about many other things, too, such as the testing procedures (the things that they would have to look at inside of me... you wouldn't believe...) and how the meds work, etc. The clinic has a very, very good reputation and great success rates, though that's harder to predict with PGD, obviously, because the genetic testing changes the odds of success a lot. One thing I learned, too, about this clinic is that they have a policy saying they will not destroy any embryos themselves. If there's any unwanted embryos that we'd made, we were responsible for doing something with them -- which could include taking them home with us to do whatever we wanted. I thought that was very interesting, and oddly reassuring. I had wondered how I would feel about destroying embryos that had "my" syndrome. But if I could, I donno, take them and let them be in the garden, that would be more comforting than letting them be thrown out in a lab or something. An interesting ethical question.
Anyway, after that appointment I was kinda torn up. I really wasn't sure what to do, the IVF thing sounded so intimidating and, though we have resources to help pay for it, the expense is a big deal, too. How many cycles was I willing to go through? What if we were extra sucessful and I DID have twins? And what were we really facing if we decided to go au naturale and possibly have a kid with SCS?
So this past Tuesday we met with our genetics team (geneticist and counselor) and the plastic surgeon who heads the surgery team at CHOP and who has seen, I don't know, like thousands of kids with SCS. It was interesting, I was examined first, then they looked at family photos and discussed the degree of severity my family has. And we discussed my surgery history as well (one major surgery for bicoronal fusion at age 2, strabismus surgery at age 5, ear tubes, etc.). He told us that likely, if we had a kid with SCS, there would be at least one surgery, and possibly as many as four. Likely two, the first for the cranial vault thingy (still not sure of terms) and another to bring the orbits forward. That's what he would have done for a child with my features, anyway. And there's the possibility that things might have to be redone along the way, depending on how the child's face and skull grow and if any of the work gets undone. He was enormously empathetic regarding my concerns for the psychological well-being of the kid/patient, when I began tearing up remembering how traumatic my big surgery was (and my tears were more about protecting my kids from such things, really!) he recalled his own experience having his tonsils taken out and coming out of the ether. He recommended a psychologist we could speak to who helps families with this kind of thing, but also reassured us that hospital care is so much more about making sure the kids are comfortable than it was back in our day.
In processing it afterward with my husband, though, I was struck with the possibility of multiple surgeries. It's one thing to have one major surgery and be done with it, but with the advances in plastic surgery the expectations have changed, too. It's not just about getting the kid to survive and not have any brain damage, as it was when I had my surgery, but it's also about helping the child look as normal as possible for their psychological well-being. And I think that this is wonderful and I'm glad that these possibilities are out there. But it's still a lot for a kid to go through. And this doesn't count other surgeries such as strabismus surgery or dealing with problems with hearing (a biggie in our family).
I was still not sure what to do. But I really didn't want to put our kids through this. So DH and I decided to imagine as if we'd chosen to do the PGD/IVF route. To try on the decision for the day. If we didn't like it, we'd go back and rethink things.
I can't tell you how much of a burden was lifted from me after making that temporary choice. And from that perspective, I was able to see that my fears of not choosing to do the PGD route were bound up in what others would think of me, especially my family. I didn't want people to think I'd rejected the SCS in them, which is of course not the case. I have it myself! And so who better to make this decision than someone who has been through this personally? And it's only right for us, and we know this is not a choice for everyone who's in our shoes.
So the decision has stayed. The plan is to try the IVF/PGD thing for at least one cycle and see how it goes. We could probably swing more cycles if we had to, but we're working out insurance and stuff to see what we can do. If it doesn't work or it's too stressful, we can stop and go ahead and do things the old fashioned way, knowing that if we have a kid with the syndrome, we'd be well taken care of by really great people. Bottom line: we did everything we could to have the healthiest kid we could, given whatever was in our control at the time.
So that's the story. If you made it this far, thanks so much for reading. I have felt so welcome here, and so understood, and so I hope this decision makes sense to you all. I will probably linger around here from time to time, though I don't know what I could contribute ... I guess time will tell what our relationship with SCS will be in the future.
Thanks so much for you love and help along this journey... it's been a heart-wrenching, soul-searching process. I love to read about your gorgeous kids and hear their courageous stories. You are an amazing, loving group of people. Bless you all.