At this point we are well into October and Mike and I have less than three weeks until we welcome our little boy into the world.
It's perfect that we are in October and that he will be born during this month because October is Spina Bifida Awareness Month!!! Yes, we are all very aware of the fact that October is also Breast Cancer Awareness Month (also important) but at this stage in our lives Spina Bifida has taken over and we are going to "Embrace the Bif", because we know that we are going to need to embrace it for our son in making sure that he has all of things that he wants and needs in order to succeed. And we want YOU to join us in learning about more!
Although Mike and I understand that this is not a diagnosis that we will have to live with but that our son will throughout his entire life, we also understand that there may be parents out there one day that will go through the same worries, surgeries, and appointments that we have gone through and will continue to go through as our son grows up. Having said that, we want to be a voice for those parents and someone that they can come to for questions. We hope that our story with our son will give future parents the hope and optimism with their own child who is diagnosed with Spinda Bifida.
I know that I have talked about my journey of this life changing experience with in-utero surgery and shared information but, as this blog continues it will walk you through HIS experience, what it is like to have a child with Spina Bifida, and everything that comes with that.
In the meantime, I would like to share with you some great links and pictures that describe the different types of Spina Bifida, gives you information about what Spina Bifida is and how it affects people, and some inspirational quotes that we felt were good to share.
Below each link or picture I have described what our son has and what we know of so far. As for our baby check-in, I will share more once we have our weekly appointment. Happy reading and Happy Spina Bifida Awareness Month!!!!
It's perfect that we are in October and that he will be born during this month because October is Spina Bifida Awareness Month!!! Yes, we are all very aware of the fact that October is also Breast Cancer Awareness Month (also important) but at this stage in our lives Spina Bifida has taken over and we are going to "Embrace the Bif", because we know that we are going to need to embrace it for our son in making sure that he has all of things that he wants and needs in order to succeed. And we want YOU to join us in learning about more!
Although Mike and I understand that this is not a diagnosis that we will have to live with but that our son will throughout his entire life, we also understand that there may be parents out there one day that will go through the same worries, surgeries, and appointments that we have gone through and will continue to go through as our son grows up. Having said that, we want to be a voice for those parents and someone that they can come to for questions. We hope that our story with our son will give future parents the hope and optimism with their own child who is diagnosed with Spinda Bifida.
I know that I have talked about my journey of this life changing experience with in-utero surgery and shared information but, as this blog continues it will walk you through HIS experience, what it is like to have a child with Spina Bifida, and everything that comes with that.
In the meantime, I would like to share with you some great links and pictures that describe the different types of Spina Bifida, gives you information about what Spina Bifida is and how it affects people, and some inspirational quotes that we felt were good to share.
Below each link or picture I have described what our son has and what we know of so far. As for our baby check-in, I will share more once we have our weekly appointment. Happy reading and Happy Spina Bifida Awareness Month!!!!
The infographic above gives a pretty good visual of the 3 major types of SB.
Myelomeningocele (sounds like: my-low-ma-nin-jo-seal;)
THIS IS WHAT BABY HILTON HAS. THE PHOTO ALL THE WAY TO THE RIGHT!!!
When people talk about spina bifida, most often they are referring to myelomeningocele. Myelomeningocele is the most serious type of spina bifida. With this condition, a sac of fluid comes through an opening in the baby’s back. Part of the spinal cord and nerves are in this sac and are damaged. This type of spina bifida causes moderate to severe disabilities, such as problems affecting how the person goes to the bathroom, loss of feeling in the person’s legs or feet, and not being able to move the legs.
Meningocele (sounds like: ma-nin-jo-seal;)
Another type of spina bifida is meningocele. With meningocele a sac of fluid comes through an opening in the baby’s back. But, the spinal cord is not in this sac. There is usually little or no nerve damage. This type of spina bifida can cause minor disabilities.
Another type of spina bifida is meningocele. With meningocele a sac of fluid comes through an opening in the baby’s back. But, the spinal cord is not in this sac. There is usually little or no nerve damage. This type of spina bifida can cause minor disabilities.
Spina Bifida Occulta (sounds like: o-cult-tuh;)
Spina bifida occulta is the mildest type of spina bifida. It is sometimes called “hidden” spina bifida. With it, there is a small gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are normal. Many times, spina bifida occulta is not discovered until late childhood or adulthood. This type of spina bifida usually does not cause any disabilities.
Spina bifida occulta is the mildest type of spina bifida. It is sometimes called “hidden” spina bifida. With it, there is a small gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are normal. Many times, spina bifida occulta is not discovered until late childhood or adulthood. This type of spina bifida usually does not cause any disabilities.
FUN FACT: If any of you are a John Mellencamp fans, he has Spina Bifida Occulta! (Thank you to Chelsea for the information on each strand of Spina Bifida and how it can affect each person.)
This photo shows what the anatomy of a "normal" baby would be (top picture.) both with their back and their brain (cerebellum, ventricles, and brain stem). It then shows you the difference with a child diagnosed with the specific type of Spina Bifida that our son has. The final picture shows you what can happen to a baby after having the in-utero surgery that Mike and I decided to go through with.
As you can see, (hopefully) the Chiari Malformation can move back into "normal position" so that the back of the brain isn't pulled down into the spinal cord. This is something we have seen from our ultra sounds recently that there is officially fluid behind his brain and that there is spinal fluid where there once was none!!! A HUGE success in the surgery and with our little boy.
The obvious difference from this photo that you can see is the back. His spinal cord has been placed back into his body so now his spinal cord is protected and isn't surrounded by the fluid that could have once been toxic to his body, growth, and development.
This diagram again shows you the different types of Spina Bifida and how it can affect a person's body. Baby Hilton has the third from the left; which is the most serious type of Spina Bifida.
Just a little inspiration to get us through tough times with our little boy. As some people may forget; Spina Bifida is not just a small issue that babies go through in the beginning of their lives, but a LIFETIME disease that he will endure as he grows up and becomes an adult.
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