Day four of San Francisco we had an appointment back at UCSF to follow up with our nurse. After all the information we received the first two days, Malone and I had a pretty strong feeling about what our decision about surgery would be. Before we had even come out I had been leaning towards not doing surgery. After coming to San Francisco, it only confirmed what I already knew; this surgery wasn't going to happen for us. There are a lot of reasons why we decided no to do the surgery.
The biggest reason for me is if we had done the surgery, it would have left me with a big scar on my uterus. This scar weakens the uterus to the point that my doctors told me that I would never be allowed to go into labor ever, not even with future pregnancies. When the uterus gets stretched out with baby and already in its weakened state, I'd be at risk of uterine rupture if I went into labor. If I had done surgery, the rest of my pregnancy I'd be extremely fragile. No lifting (more than 5lbs), I would be very limited in what I could and couldn't do, I wouldn't be able to work, and I'd be mostly on bed rest. This is all because when the surgeons do surgery on the uterus like this, they are tampering with a muscle that doesn't like to be tampered with. When it's tampered with it wants to contract. And so after surgery, it is extremely important that the uterus does not do this. You've got this incision that is trying to heal itself AND stretch because baby is still growing. That puts a lot of stress on the uterus. So I would have had to be on all sorts of meds to keep that uterus relaxed throughout the rest of pregnancy. If the uterus starts to contract and my water breaks and I go into labor, my uterus could rupture. As I said before, this isn't just something that affects this pregnancy, this is what every pregnancy from now on would be like. This is our first child and we had hoped on having more in the future. We have a long way to go, and I don't want to be a ticking time bomb every pregnancy. Pregnancy is scary enough as it is.
Another big reason for our decision is that it increases the chance of our baby coming premature. This is common with fetal surgery. With the surgery, babies average about 34 weeks gestation. There have even been some babies that come around 28 weeks. For us, we didn't want to take a chance that our baby could be born this early because prematurity brings on a whole new set of issues that can happen. It could make things even worse for him. Plus he'd be stuck in the hospital most likely till his due date.
Those two things were the biggest reasons we didn't do surgery. Of course with every surgery you have all those other things, though unlikely, that could also go wrong. There are always risks with any surgery. These didn't bother me as much as the other two big things did. There was a concern about my care after the surgery. After discharge I'd have to stick around for 2-3 weeks just to make sure I was doing ok and that I wasn't showing signs of preterm labor. If everything went well then I would have been able to come home. But I would have still been fragile and my doctors worried that if anything were to happen, if I would have the proper medical care here to take care of me in my condition and the condition of the baby. This was a debatable topic. Overall, we decided the best thing to do would be to relocate to Salt Lake City to be near Primary Children's where there would be doctors who could handle this situation if anything went wrong. While I am more comfortable with the idea of living in Salt Lake than San Francisco, having to relocate would still be a pretty big deal for me. Finding somewhere to go and someone who could take care of me 24/7 for the rest of the pregnancy would have been difficult I think. While this option was possible ( we probably could have worked something out ), it just weighed against the possible positive outcomes.
Another reason against the surgery, for us, it felt like a big gamble. We'd be gambling all these risks for just a chance that things would be better for our baby. There are no guarantees of the outcomes. The babies that have had this surgery are still at risk of needing a shunt, and there is a chance that it might help with motor function, and it might help reduce the malformation in the brain. Babies that don't do FS and wait till they are born might be a higher risk of needing a shunt, but a whole lot less likely of being born early and having all those problems in addition to what they've already got. And for us based on the condition that our baby is currently in, we felt that he had a better chance than most kids because his condition is somewhat mild compared to what it could have been. His lesion is low, and small, and covered, he has no club feet, and the malformation in his brain is minimal. There is a chance that the malformation could change between now and when he is born, but it was the only risk we were willing to take.
While I am a little bummed that the surgery didn't work out, I feel good about our decision. It's almost a relief actually because now our lives can somewhat go back to normal. I can go back to work, Malone can go back to work and school, we can continue to take care of our dogs and be in our home. As far as our plan about what will happen when the baby is born I don't know exactly yet. We'll need to get in touch with our specialist in Idaho Falls and our nurse and get that all figured out with doctors down in Salt Lake City and possibly even visit down there.
For now, I can have peace of mind that we are doing the right thing that is best for our family. And I have faith that things will work out okay. We have lots of support from friends and family who are willing to help us. This experience has truly showed me how much love my Heavenly Father has for me and my little family and how he takes care of us through all those people who go out of their way to serve us and help us at this time. I feel very blessed to have them in my life and for the perspective I have gained through this experience.
10 years ago
0 comments:
Post a Comment