You know those historical days where you can remember exactly where you were and what you were doing when you found something out? In my generation, it would be when Princess Diana died or when the towers were hit on 9/11. Well, a different scenario, how about never forgetting a certain date because of something so completely life changing and eventful that if someone ever mentions that date or a date around that date that your mind immediately sways toward the "big event." Alright, alright, you get my point.
Almost 20 weeks along and on the edge of our seats waiting to go in to our first ultrasound to find out the sex of our baby. Yes, this was the main reason we felt it was worth the $200 that we had to pay out of pocket (we had no insurance). Why else would be need a sonogram when our baby was completely healthy, right? I hadn't been doing anything to harm the baby in any way shape or form. My mother had decided she wanted to be a part of this big day. She didn't get to see my sister's two girls up on the big black and white screen. So here we go - getting to check out this creature growing inside of me...kicking around.
So, measuring here and there, it takes forever.
As I mentioned above, my sister has two girls, I just assumed that we were going to have a girl. I could just picture all these little girls running around my mother's house at Christmas time. I was wrong, plain and simple...a nice set of balls showed up on the screen. Can't be mistaken for anything else. After a couple minutes, the X-Ray tech, seemed really quiet and made a comment that our baby was a big squirmer. He was such a squirmer in there that she couldn't get a good picture of his lower back. She left the room with an odd feeling roaming over all of us.
Then the sonogram doctor came in to the room. He took a look himself at the sonograms not saying much then sat down and said "Your baby has Spina Bifida." WHAT?!? I am sorry, say again, our baby has Spina Bifida? Stating it so plain and simple as though he just told us that dinner was ready, just so matter of fact. How could this happen, what did we do wrong, what did I do wrong? How come our son isn't completely healthy?
My mother knows what Spina Bifida is but Chad and I really don't know and need Dr. Darby to explain it to us. He mentions there are 3 different kinds. One kind, Spina Bifida Occulta where most of the time is undetectable until later in life when an adult starts to have back pain. Then there is Spina Bifida Meningoceles where the the nerves (meninges) are outside of the body in a sac. Then the most severe Myelomeningocele where the spinal cord and nerves are outside of the body in a sac.
Our precious unborn baby boy has Myelomeningocele. The most severe. His spinal cord and nerves are outside of his body in a sac. The most severe kind, however, it is very low on his back. He explains that our son my not be able to walk. There are other things that can develop with Spina Bifida including Hydrocephelus, which is fluid on the brain and they have to have a shunt to drain the fluid out. They can also develop club feet. They have Arnold Chiari Malformation. Our doctor explains that our son so far did not have any other issues that can develop but they can develop over time while he is in the womb and after he is born. There was nothing we could do about it. Nothing.
Nothing could be done to fix our child. How in the world in this modern day could there not be something that could "fix" our child. He would have to have repair surgery as soon as he was born. The doctor mentions that there was a study going on where you could have the repair surgery while he was in the womb but you have to be picked for the surgery even if you participate in the study. (We looked into the MOMS study, even spoke to the representative about it but decided not to participate. However, I do want to say that we support the study because how else would we find out if the in utero surgery is beneficial or not.)
Almost 20 weeks along and on the edge of our seats waiting to go in to our first ultrasound to find out the sex of our baby. Yes, this was the main reason we felt it was worth the $200 that we had to pay out of pocket (we had no insurance). Why else would be need a sonogram when our baby was completely healthy, right? I hadn't been doing anything to harm the baby in any way shape or form. My mother had decided she wanted to be a part of this big day. She didn't get to see my sister's two girls up on the big black and white screen. So here we go - getting to check out this creature growing inside of me...kicking around.
So, measuring here and there, it takes forever.
As I mentioned above, my sister has two girls, I just assumed that we were going to have a girl. I could just picture all these little girls running around my mother's house at Christmas time. I was wrong, plain and simple...a nice set of balls showed up on the screen. Can't be mistaken for anything else. After a couple minutes, the X-Ray tech, seemed really quiet and made a comment that our baby was a big squirmer. He was such a squirmer in there that she couldn't get a good picture of his lower back. She left the room with an odd feeling roaming over all of us.
Then the sonogram doctor came in to the room. He took a look himself at the sonograms not saying much then sat down and said "Your baby has Spina Bifida." WHAT?!? I am sorry, say again, our baby has Spina Bifida? Stating it so plain and simple as though he just told us that dinner was ready, just so matter of fact. How could this happen, what did we do wrong, what did I do wrong? How come our son isn't completely healthy?
My mother knows what Spina Bifida is but Chad and I really don't know and need Dr. Darby to explain it to us. He mentions there are 3 different kinds. One kind, Spina Bifida Occulta where most of the time is undetectable until later in life when an adult starts to have back pain. Then there is Spina Bifida Meningoceles where the the nerves (meninges) are outside of the body in a sac. Then the most severe Myelomeningocele where the spinal cord and nerves are outside of the body in a sac.
Our precious unborn baby boy has Myelomeningocele. The most severe. His spinal cord and nerves are outside of his body in a sac. The most severe kind, however, it is very low on his back. He explains that our son my not be able to walk. There are other things that can develop with Spina Bifida including Hydrocephelus, which is fluid on the brain and they have to have a shunt to drain the fluid out. They can also develop club feet. They have Arnold Chiari Malformation. Our doctor explains that our son so far did not have any other issues that can develop but they can develop over time while he is in the womb and after he is born. There was nothing we could do about it. Nothing.
Nothing could be done to fix our child. How in the world in this modern day could there not be something that could "fix" our child. He would have to have repair surgery as soon as he was born. The doctor mentions that there was a study going on where you could have the repair surgery while he was in the womb but you have to be picked for the surgery even if you participate in the study. (We looked into the MOMS study, even spoke to the representative about it but decided not to participate. However, I do want to say that we support the study because how else would we find out if the in utero surgery is beneficial or not.)
Never knew so many thoughts could run through ones mind. To go from nothing is wrong to something is wrong in a second. What had I done to my child? Was it my fault? He mentioned taking prenatal vitamins, I had started as soon as I knew I was pregnant. He mentioned something about genetics. Neither Chad or I knew of anyone on either side having SB. Then he mentioned they really don't know why it happens and research continues. Well of course they don't because I didn't know why it happened to us. I mean all of our friends and family had healthy children why would we not have a healthy child? Chad and I were both healthy people. Heck, we both hardly ever get sick.
The emotional roller coaster that you are immediately thrown on makes you dizzy. You feel as though you are floating not walking. Nothing seems to matter anymore. Who are these people around you, what does this world mean anymore? Why me, why us? The thoughts are uncontrollable. The tears are starting to come but I hold them back. We now have to go see my OB/GYN, we are late to our appointment but they already know why. We walk into the waiting room and just look at the receptionist and she tells us to come on through because they already know, they already know that our son has Spina Bifida and we see it in their eyes. Sorrow, sadness, angst. Our busy doctor is waiting for us to get there so we can sit down and discuss something that is UN-discussable at this very moment. She basically tells us that our son will most likely not walk. I don't blame her but wow, take that in. It feels like a slap in the face, not by her but by the world, life, even God.
My friends were just texting me and calling me trying to hear from me about the sex of the baby because that was supposed to be a fun moment of our pregnancy. It didn't matter anymore, my baby had Spina Bifida. I didn't even know what it meant. My world has just turned upside down and side ways and inside out. Our lives and dreams have come to an immediate halt. Stop contacting me, I can't even gather my thoughts.
I call my best friend Kristen and somehow utter the words that will one day become an everyday thing. Words that will one day come out without tears but with a smile. Words that will one day mean so much more than I could ever imagine. Words that will be so familiar. My son has Spina Bifida. Will these words define or just describe my son one day?
I call my best friend Kristen and somehow utter the words that will one day become an everyday thing. Words that will one day come out without tears but with a smile. Words that will one day mean so much more than I could ever imagine. Words that will be so familiar. My son has Spina Bifida. Will these words define or just describe my son one day?
I want to end this post with the ultimate comment from the doctor. Since Spina Bifida can be very severe, "you have the option to terminate." Chad and I look at each other and both shake our heads no. Some say you made a choice but we didn't make a choice. There was no choice to make. The Lord has given us this child and it is only going to make us stronger. With all the emotions, mental thoughts that we are both going through at this very moment, we still knew that no matter what, Spina Bifida or not, this was our son, and OUR SON ONLY, and we couldn't wait to meet him.
