Fetal Surgery Saga Conclusion

I know you thought the saga was over right? CHOP told us no end of story no fetal surgery...well not quite. After we returned home to Mississippi we were referred to Oschners in New Orleans because it was the closest hospital that could really care for little K. Close being a relative term, we had to drive 90 miles each way to get there.
My first visit I was going to meet with my new MFM doctor and the neurosurgeon who was supposed to close up little K's back after he was born. Everything went well, I clicked with my new MFM and felt really comfortable with the plan to wait until as close to my due date as possible to have a C-section. This would allow for little K to grow as big and strong as he could so when it came time for surgery he would have the best chances of minimal complications. We discussed fetal surgery and the evaluation CHOP gave me and all seemed normal, then the ideal of fetal surgery was brought up again as an option.
Say what? Going to be honest I didn't really even know they did fetal surgery because there really are only a handful of places that are well known for it (and they weren't one of them yet). I was stunned and overwhelmed because I had just been told a very definitive no by one of the leading centers so I had written that chapter of my life and closed that book. To reopen that book was confusing. After talking with their neurosurgeon I had about 2 days to consider the option because of how late in the pregnancy I was at this point. I left the appointment in a haze so many thoughts running through my head I couldn't wrap my brain around it all and to make it worse I had to endure that 90 mile drive home alone because the hubs couldn't get off work. It was a long drive to say the least.
So to not drag this story on any longer (because it's long enough already) we ultimately decided not to have fetal surgery done. There were so many factors we had to weigh in this decision and when it was all said and done the risks did not seem to outweigh the benefits in my situation. This is NOTHING against Oschners fetal surgery program or the doctors there because I think they are all great. But I had a then 1.5 year old child at home that needed his mom and fetal surgery would have me laid up in bed for 3 months. Fetal surgery is MAJOR surgery and the risks are great to both myself and the baby and I just didn't feel right about so much risk. The benefits to fetal surgery are great for a lot of babies but in our case they weren't as profound as in some other cases due to things we saw on the ultrasound. We went round and round for a day or so with the yes lets do it and just try to give little K even the smallest benefit and the No it's just too risky. In the end we decided it just wasn't right for us. I would be lying to tell you that I don't think about it from time to time, what if I had done it? Would things be different? How would things have changed? But I don't regret my decision, I honestly think it was the right decision for us and wouldn't change it for the world.
There it is the Fetal Surgery Saga! And a Saga that was for us. And to think this was just the beginning of our Spina Bifida journey? Little K was even born yet!