Thursday, September 25, 2014

Fetal Surgery for Spina Bifida in Utero

The surgery had the possibility of doing so much good. The only thing was they had to do the surgery before 26 weeks so we were on a time crunch. So we thought for sure we were going to do it as long as we could get everything figured out and we qualified. The problems with the surgery were that after my wife would have to be on bed rest. When they do the surgery they have to cut a hole so there is a very real possibility the baby comes early. So that created a whole different dynamic because we have other family members to think about as well. Along with him coming early was the risk of development. Would he stay in long enough to be developed? What if he wasn't? All these things had to be taken into account. After we were told that we qualified as far as my wife's health and the babies health we were excited. But we knew that our insurance had to cover the surgery as well. Our doctor told us that she would put together a presentation and show them why the surgery was necessary. We got approved for the surgery from our insurance. But then came the first problem.

By this point in the process we were all ready at 23 weeks. So we didn't have that much time to get to where we needed to do the surgery and have it done before the 26th week. The surgery was in San Francisco so the insurance had to work out whether California would take our insurance. Well we kept wondering what was going on because it had been a week since our insurance had said they would cover the surgery. We got a call from the hospital in San Francisco that said they were going to take 3-4 weeks to work out the details on if they would cover it. Well we didn't have 3-4 weeks. So we freaked out a little bit. We called the doctors in Salt Lake to find out what we could do. They told us that there was a hospital in Houston that did the surgery. We thought this was awesome because a family member of my wife's lived near Houston. But the Houston hospital told us that my wife would more then likely have to stay in Houston until the baby came! WHAT? How in the world is a mom with two kids and a husband in summer school and fall semester starting supposed to stay 24 hours away from home from July to the middle of October? So we were hoping that she would be healthy and everything was OK so she could just come home after the three weeks.

So we started to try and get everything figured out for us to go to Houston. Our insurance for Houston got approved in two days. We were so happy. We were looking into travel and thought we were going to fly but to rent a car for three weeks was way to expensive. So we decided we were going to drive all the way there. Its a 24 hour drive which is insane. We were trying to figure out what to do with our girls. We knew we couldn't take them because there would be nothing for them to do in Houston. So we were setting up babysitters for all the days we would be gone. We had my mom coming down to stay with them for a period of time. It was pure chaos trying to get it all figured out. In the meantime we had a family reunion going on in Cedar City at our house that we were over with my family. So on top of us worrying about the surgery and leaving our 3 year old and 1 year old for three weeks we were trying to figure out the reunion. Luckily my family is awesome and understood even if sometimes we were a bit frazzled.

Because of the reunion and our last minute decision to drive we were planning on leaving Saturday morning and we had to be there Monday morning at 8:00. So we would drive for 12 hours both days. The night before we were planning on leaving my wife had a full on breakdown. She didn't know how she was going to leave the girls behind. Especially if she had to stay there for 3 1/2 months. She wanted to take the girls with us. I knew there was no way our girls would sit in a car for 12 hours so that would extend the trip. We just didn't have the time to stop and do that. Our housing situations just kept falling through. We had no idea where we were going to stay or what we were going to do. After about an hour of discussing we decided not to go through with it.

This was one of the hardest decisions I have ever had to make. We later found out that most families that have other young kids do not do the surgery because of the strain and the hard things that have to go on after the surgery. This was one of those moments though that people talk about when your a parent. You have to make a decision that affects 5 different people. Maybe the decision isn't going to be equal across the board for every individual. But how do you make that decision? How do you say that this person is more important? When they really are not more important but you still have to make the hard decision. Sometimes in life we have to make those hard decisions. As a parent you have to make them and you and your spouse are the only ones that can make them. No one else knows your family and the best decisions for them. At this point I know that the decision we made to not have the surgery was the right one. And I will not regret the decision we made ever.

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