When a baby is developing in the womb very early on the back will not close up like it is supposed to. The bones of the spine do not form properly around parts of the spinal cord. This can be either minor or severe. Sometimes with some babies there is more then one opening. By the point you find out that you are having a baby this defect had all ready formed on your baby. Another part of spina bifida is the fluid buildup in the brain. This is called hydrocephalus. What happens is the brain does not drain the spinal fluid correctly because of the malformation of the spine. Because of this your child will need a shunt to drain the liquid from the brain. It is also referred to as "water on the brain". This can cause seizures, learning problems, or vision problems. Depending on where the lesion is located determines how much control or lack there of in some cases the person has.
Starting from the bottom up I will show a little bit of what each controls. Below the L5 you have the controls of the bowel and bladder. L5 to L1 controls all the way up to the waste. The L3 is where they will be able to, for the most part, walk and be OK walking around. T12 to T7 are the abdominal muscles. T7 to T1 are the chest muscles. So essentially the lower on the spine the better off the person is going to be.
So what does this mean for our baby? We were extremely lucky and blessed with everything that has happened. I can truly say A LOT of prayers have been answered. Thanks to family, friends, and little sisters that prayed for our little guy we have been very fortunate. At first we thought from our initial ultra sound that it was on the L3. So this could have affected how well he walked. But later on when we got some better images they were able to determine that it was on the L5 which is very good. He will have bowel problems the rest of his life and have to use a catheter. But from how severe it could be we can handle that. At this point as well his brain fluid level has been measuring at a normal level. It could still change and it might change but at this point he would not need a shunt. This would lower the chances of him having infections and having to have the shunt changed every few years. The shunt and brain fluid was what the surgery that we could have done had the chance of fixing.
This is something that will affect him for the rest of his life. But I know as a father I need to make it so he doesn't blame everything for this. I am blind in my left eye and they told my parents that there was no way I was going to play sports. That I could possibly have problems walking even. I played sports growing up and was able to do the things that I want to do. Was I limited sometimes and could tell things affected me? Yes, but that didn't stop me from trying and doing my best. I hope that I can pass that on to my son and he can be successful in anything that he wants to do.
Saturday, September 27, 2014
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.
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.
Tuesday, September 23, 2014
Finding out about spina bifida
For my first post I am going to go back and talk a bit about what we have went through since we found out that our son had spina bifida. We found out at our week 18 ultra sound. Usually this time is filled with a lot of joy. I was expecting another girl (we all ready have two). But it was a boy and I was ecstatic. I love my girls and I would have been just fine with another girl but being a guy there is just something about knowing that you are having a boy to pass on your name. So there was a definite joy in the room when they said that we were having a boy. The whole ultra sound took forever. We had a new nurse and everything was just so weird in the room. We later wondered if they saw the spina bifida so were trying to figure out what was going on.
We got the call later that afternoon saying that something was wrong. We knew something was up when our doctor called that quickly. It was on a Thursday and we didn't expect to hear from him till the next week just to say congratulations and everything was not OK. My wife answered the phone and was talking to him and came back in and said that he had a lemon shaped head and that could mean that he had spina bifida. At this moment so many things go through your mind. Who is to blame? Is it me? I am adopted so I have no idea what kind of health issues I could pass on to my children because I don't have that information. The blame can then try to get passed on to your spouse. What did they do? Did they not take their vitamins? Could that have helped? It is a whirlwind of things that go through your mind in a matter of minutes.
We were referred to a doctor in St. George that dealt with problems with pregnancies because he would know more about what was going on and what they could do to help. When we got there we were hoping that the new nurse had just messed up and taken some horrible images and that was the reason why there was a problem. When we got there though that was not the case. We found out he did in fact have spina bifida and then we talked about the options. There was a surgery that could be done while the baby was still in the womb. This would decrease some of the risks that could happen when he came out. We thought that was something we would want to look into and see if it would work. There was a long process though to find out whether we could qualify.
The University of Utah hospital was an in between for patients who went and got the surgery and then had to come back to Utah. There was only a handful of places in the United States that did this surgery because it was relatively new. One of them was San Francisco and we figured that is where we would go if we qualified because it was the closest one. We did all the tests necessary to find out whether we could do the surgery or not and we were eligible. We were so excited. But then came the problems with the surgery.
We got the call later that afternoon saying that something was wrong. We knew something was up when our doctor called that quickly. It was on a Thursday and we didn't expect to hear from him till the next week just to say congratulations and everything was not OK. My wife answered the phone and was talking to him and came back in and said that he had a lemon shaped head and that could mean that he had spina bifida. At this moment so many things go through your mind. Who is to blame? Is it me? I am adopted so I have no idea what kind of health issues I could pass on to my children because I don't have that information. The blame can then try to get passed on to your spouse. What did they do? Did they not take their vitamins? Could that have helped? It is a whirlwind of things that go through your mind in a matter of minutes.
We were referred to a doctor in St. George that dealt with problems with pregnancies because he would know more about what was going on and what they could do to help. When we got there we were hoping that the new nurse had just messed up and taken some horrible images and that was the reason why there was a problem. When we got there though that was not the case. We found out he did in fact have spina bifida and then we talked about the options. There was a surgery that could be done while the baby was still in the womb. This would decrease some of the risks that could happen when he came out. We thought that was something we would want to look into and see if it would work. There was a long process though to find out whether we could qualify.
The University of Utah hospital was an in between for patients who went and got the surgery and then had to come back to Utah. There was only a handful of places in the United States that did this surgery because it was relatively new. One of them was San Francisco and we figured that is where we would go if we qualified because it was the closest one. We did all the tests necessary to find out whether we could do the surgery or not and we were eligible. We were so excited. But then came the problems with the surgery.
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