After a week of getting information about this in-utero surgery for our baby boy we decided to continue in anyway that we could to find out if we were a candidate for the surgery. Step one was having to complete an amniocentesis. This is when doctors need to take fluid from the amniotic sack to check and see if there are any other chromosomal challenges. This can be a risk and although some women choose to have it done, many do not. (http://www.webmd.com/baby/guide/amniocentesis)
Baby and I went through this procedure and we had to rest for about 48 following in order for the fluid to replace itself and to make sure that the baby was alright. From there it was a 10-15 day wait to see if anything else was found with the baby.
Step Two: Fetal MRI. It was very early in the morning where the baby had to undergo a fetal MRI where doctors could see where his legion was on his spine and to see if where it was located made him a good candidate. We spent about an hour in the tube taking pictures, followed by doctors visits, another ultra-sound and getting the results back. (http://www.medscape.com/viewarticle/470837_2)
When we first found out about our baby boy we were told that his legion (or where the nerves were coming out of his back) were at his L1 (Lumbar region). With the spine there are four different areas; cervical, thoracic, lumbar, and sacrum. (http://www.google.com/imgres?imgurl=http%3A%2F%2Fwww.backpain-guide.com%2FChapter_Fig_folders%2FCh05_Anatomy_Folder%2FCh5_Images%2F05-4_Overall_Spine.jpg&imgrefurl=http%3A%2F%2Fwww.backpain-guide.com%2FChapter_Fig_folders%2FCh05_Anatomy_Folder%2F4OverallSpine.html&h=778&w=648&tbnid=A1ocVtxcuu54vM%3A&zoom=1&docid=HOQOMRgANVQ-gM&ei=oEbtU7zyJYynyAS-54HIBQ&tbm=isch&ved=0CDQQMygBMAE&iact=rc&uact=3&dur=329&page=1&start=0&ndsp=26)
The L1 is the beginning of the Lumbar region which we were told would affect him from his hips down, as well as his bladder and sexual organs. This means that he may have a hard time walking, if at all, and if he could may need a wheelchair for long distances. It also meant that he would need a catheter as he grows up. Luckily for my family, Mike is a chiropractor so knowing the spine is his specialty (thank God because I would have had no idea about any of this without him). However, after the MRI we received good news that the legion was lower than what the doctors thought from the ultra-sound. Our baby boy's legion was located between his L3 and L4 which is much lower, to the area that could be considered below his knees. This was amazing news to hear because it meant that his hips would not be affected as we had thought before. It does not take away from the bladder issue or his sexual organs but that is something that we won't know about until he is older. As for his legs, there is hope that he will be able to walk but it may take more time then it would for other children; again something we wouldn't know until it's he is at that stage in his life.
Once this was all complete we found out the results to the amniocentesis, all was clear and there were no other chromosomal challenges! This was a relief to us because we were another step closer to surgery. Our reason for wanting to have this surgery was due to the fact that we felt it was going to give our son the best chance of life as we could. The nerves continued to pull on his body, causing fluid to build up in his brain which can cause the cognitive issues I had talked about previously. With this surgery, there would be a good chance that the brain would have time to heal and that the fluid would no longer be backed up. Most babies with Spina Bifida need to have a shunt input into their head to help drain the fluid (about 82-86%) but with getting the chance to have the surgery it lowers the risk of needing a shunt to 42-46%, which is something we took into serious consideration.
With all of the tests and appointments complete we found out that both baby and I were considered an excellent candidate for the surgery and we continued to move forward. Mike and I did talk about this procedure at great length because there are great risks; if surgery wasn't successful it could mean that the baby would need to be taken out and born between 23-24 weeks, which would be way to early for a preemie baby with Spina Bifida. There was also the risk that my water could break, at which point I could still continue to carry the baby but would need to stay at the hospital until he was born. There is the risk where my uterus could collapse which would be a loss with the baby and me not being able to have any other children. We also knew that because my uterus was being cut open in a much bigger area than a cesarean section I may not be able to carry another child because it would be too much for my uterus to handle and stretch; if I can carry another child they will need to be born by the 36th week so as not to stretch and tear the uterus wall. In any surgery there is the risk of both death to myself (which has not happened to any mom who has had this surgery) and to the baby (which has occurred during this procedure in the past, but not often). In any case following surgery, I would have to go to the hospital every week for doctors to see how both myself and the baby boy are healing as well as to check on his overall growth, the healing of his back, and the healing process of his brain and the fluid inside of that area.
After talking it over together and with our family we told the team of doctors that we were ready for surgery. The date was set: July 29th, 2014.
Baby and I went through this procedure and we had to rest for about 48 following in order for the fluid to replace itself and to make sure that the baby was alright. From there it was a 10-15 day wait to see if anything else was found with the baby.
Step Two: Fetal MRI. It was very early in the morning where the baby had to undergo a fetal MRI where doctors could see where his legion was on his spine and to see if where it was located made him a good candidate. We spent about an hour in the tube taking pictures, followed by doctors visits, another ultra-sound and getting the results back. (http://www.medscape.com/viewarticle/470837_2)
When we first found out about our baby boy we were told that his legion (or where the nerves were coming out of his back) were at his L1 (Lumbar region). With the spine there are four different areas; cervical, thoracic, lumbar, and sacrum. (http://www.google.com/imgres?imgurl=http%3A%2F%2Fwww.backpain-guide.com%2FChapter_Fig_folders%2FCh05_Anatomy_Folder%2FCh5_Images%2F05-4_Overall_Spine.jpg&imgrefurl=http%3A%2F%2Fwww.backpain-guide.com%2FChapter_Fig_folders%2FCh05_Anatomy_Folder%2F4OverallSpine.html&h=778&w=648&tbnid=A1ocVtxcuu54vM%3A&zoom=1&docid=HOQOMRgANVQ-gM&ei=oEbtU7zyJYynyAS-54HIBQ&tbm=isch&ved=0CDQQMygBMAE&iact=rc&uact=3&dur=329&page=1&start=0&ndsp=26)
The L1 is the beginning of the Lumbar region which we were told would affect him from his hips down, as well as his bladder and sexual organs. This means that he may have a hard time walking, if at all, and if he could may need a wheelchair for long distances. It also meant that he would need a catheter as he grows up. Luckily for my family, Mike is a chiropractor so knowing the spine is his specialty (thank God because I would have had no idea about any of this without him). However, after the MRI we received good news that the legion was lower than what the doctors thought from the ultra-sound. Our baby boy's legion was located between his L3 and L4 which is much lower, to the area that could be considered below his knees. This was amazing news to hear because it meant that his hips would not be affected as we had thought before. It does not take away from the bladder issue or his sexual organs but that is something that we won't know about until he is older. As for his legs, there is hope that he will be able to walk but it may take more time then it would for other children; again something we wouldn't know until it's he is at that stage in his life.
Once this was all complete we found out the results to the amniocentesis, all was clear and there were no other chromosomal challenges! This was a relief to us because we were another step closer to surgery. Our reason for wanting to have this surgery was due to the fact that we felt it was going to give our son the best chance of life as we could. The nerves continued to pull on his body, causing fluid to build up in his brain which can cause the cognitive issues I had talked about previously. With this surgery, there would be a good chance that the brain would have time to heal and that the fluid would no longer be backed up. Most babies with Spina Bifida need to have a shunt input into their head to help drain the fluid (about 82-86%) but with getting the chance to have the surgery it lowers the risk of needing a shunt to 42-46%, which is something we took into serious consideration.
With all of the tests and appointments complete we found out that both baby and I were considered an excellent candidate for the surgery and we continued to move forward. Mike and I did talk about this procedure at great length because there are great risks; if surgery wasn't successful it could mean that the baby would need to be taken out and born between 23-24 weeks, which would be way to early for a preemie baby with Spina Bifida. There was also the risk that my water could break, at which point I could still continue to carry the baby but would need to stay at the hospital until he was born. There is the risk where my uterus could collapse which would be a loss with the baby and me not being able to have any other children. We also knew that because my uterus was being cut open in a much bigger area than a cesarean section I may not be able to carry another child because it would be too much for my uterus to handle and stretch; if I can carry another child they will need to be born by the 36th week so as not to stretch and tear the uterus wall. In any surgery there is the risk of both death to myself (which has not happened to any mom who has had this surgery) and to the baby (which has occurred during this procedure in the past, but not often). In any case following surgery, I would have to go to the hospital every week for doctors to see how both myself and the baby boy are healing as well as to check on his overall growth, the healing of his back, and the healing process of his brain and the fluid inside of that area.
After talking it over together and with our family we told the team of doctors that we were ready for surgery. The date was set: July 29th, 2014.
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