All About Carver
Carver was born 2 months premature on March 18, 2012. While in Mommy's belly, he was diagnosed with severe Schizencephaly (a very rare brain deformity) and Hydrocephaly (fluid pressure in the skull). He was born weighing 3 lbs 14 oz, and 16 inches long.
To define Schizencephaly: it is a developmental birth defect. It is characterized by abnormal slits or clefts in the cerebral hemispheres of the brain. People with clefts in both hemispheres commonly have developmental delays, delays in speech and language skills, seizures, and problems with brain-spinal cord communication. Individuals with clefts in only one hemisphere are often paralyzed on one side of the body, may have seizures, and may have average to near-average intelligence. Other signs and symptoms may include an abnormally small head (microcephaly), hydrocephalus, intellectual disability, partial or complete paralysis, or poor muscle tone (hypotonia). Treatment generally consists of physical therapy and drugs to prevent seizures. In cases that are complicated by hydrocephalus, a surgically implanted tube, called a shunt, is often used to divert fluid to another area of the body where it can be absorbed.
In Carver's case, there is no significant brain matter on the left side. This means that almost all of his frontal, parietal, and occipital lobes are missing on the left side of his brain. They have been replaced with cerebral spinal fluid. On the right side, there is a very thin layer of brain in the shape of an "O", which is filled with a large amount of spinal fluid. His cerebellum and lower brain (which regulates bodily functions such as heartbeat and breathing) are intact and functioning, although some reports have said it is hypoplastic (which means underdeveloped).
A few days after birth, Carver's head began to swell at a very fast pace. Because of the excessive fluid pressure, he underwent surgery to have a shunt (drain) placed in his head. It is basically a tube that runs under his skin from his skull down to his abdomen. It helps to drain the excess fluid and will most likely remain there for the rest of his life. A few weeks after his surgery, his incision site got a staph infection which put him in the hospital for another 2 weeks (and 2 additional operations).
Because of the nature of his diagnosis, Carver has seizures which have (thankfully) been helped with medication. It is very easy for him to become over-stimulated, which can create stress for him and in turn, cause seizures. He also has microcephaly (a small head due to lack of brain tissue growth) and a little trouble regulating his body temperature (because of his brain condition).
Despite these few downfalls, Carver is doing exceptional! Even though he has only a small amount of significant brain tissue, he passed his hearing and vision tests, he smiles and giggles, he coos and squeals, he can hold his head up and rolls over, and he can grasp objects with his hands. He is doing very well developmentally so far! He is truly a a miracle and has come to be our greatest teacher. Thank you for showing him support and love by following his journey with us!
This blog was created so that others can watch him grow and follow his journey with us. He is beyond miraculous and we want to share his story with the world! Contact us: firstname.lastname@example.org
Thursday, February 9, 2012
This week has really been a week of hope for me. I was able to get some amazing persectives and support from family and friends. It gave me a new outlook, as well as a new hope that I didn't have before.
Carver is going to be special. Special to everyone. Not just me, not just his dad or brothers- but everyone in our family (and everyone he meets.) He has something amazing to show us, and no matter what- there is only going to be endless positivity from his existance.
I'm looking forward to meeting him and seeing all of the amazing things he is going to accomplish. It's going to be a wonderful experience and I'm glad we get to share it with him.
We also got great news today! Because of Carver's diagnosis, we are going to be able to get his cord blood banked at no cost. This will allow us to have his stem cells transfused at a later time. There have been some amazing results with other conditions, and we want to take every opportunity we can. Even though it will be quite expensive to do (and our insurance won't pay for it), we might be able to do some fundraising for it. In any case, at least we will have his cord blood banked!
Because of insurance, we're not going to get the 2nd opinion (yet) from the specialist OKC. We've decided to wait until we get the MRI results and go from there. I was able to get the name and address of a specialist at a children's hospital in Boston. He is an expert in this field and will be able to give us a very accurate diagnosis using our MRI results. We will be sending them to him as soon as we get them.
I have a few loved friends who will be sending me some amazing things in the mail. I look forward to getting them and it really warms my heart to see just how kind and compassionate people are when you need them most.
Tuesday, February 7, 2012
Thursday, February 2, 2012
Being pregnant with Carver has been a breeze. I barely had any morning sickness (the little I had went away very quickly) and I really didn't even feel pregnant until my belly actually started growing. He has been so peaceful and gentle already.
At about 20 weeks, my OB/GYN sent me to the hospital to have a formal ultrasound performed. They were able to get a better view of the baby and take all of his measurements. Everything looked perfect, but his brain wasn't looking quite right to me. I brushed it off and figured I was examining it too much without any expertise. They told me that the radiologist would get back to us with the results in a few days.
We went to grab something to eat after the visit, and before we could even get our food on the table, my doctor called me. I looked at the phone number on the screen and was a bit shocked. Why would he be calling me already?
I answered the phone. My doctor began to explain to me that the radiologist called him and let him know it looked like the ventricles in his brain were enlarged. Yikes. What does that mean??
He recommended that we go to a maternal/fetal medicine specialist and have a 2nd stage ultrasound performed to get a better look. I was a bit stunned and wasn't sure how serious the prognosis was. I cried when I hung up the phone. Thankfully, my husband was able to comfort me and help me calm down.
As soon as I arrived home, I began to research. I read that enlarged ventricles were pretty common (especially in boys) and that they usually resolve themselves during the pregnancy. I was relieved. Instinctively, I didn't feel there was anything wrong and everything was going to work out fine. I was able to get back to normal and go on with my daily routine.
The specialist was a very busy doctor, and we weren't able to get an appointment for a few weeks. This wasn't too big of a deal to me, although I really wanted to find out right away. I figured it would give Carver plenty of time to get any issues resolved. So I was going to be patient and enjoy the time as best as I could.
My appointment date finally came around on January 31, 2012, at about 25 weeks.
The ultrasound was going as normal, but the sonographer was spending an excessive amount of time looking at his skull and trying every which way to get a "better picture". Her face was calm, and she didn't seem too surprised or anything... so I took that as a good thing. As I watched her scan the brain over and over, I knew there was something wrong. It wasn't symmetrical most of the time she was looking at it. One side was larger than the other. Sometimes, it seemed to be symmetrical, but that was only when she scanned lower in the skull.
I just knew in my heart that it wasn't the way it was supposed to be, but I didn't realize the extent of it.
We sat in the waiting room for the specialist to look over the scans. It was freezing in there and it seemed to take forever. Finally, he opened the door and asked us to come to his office. The look on his face was pretty grim, and I knew this wasn't going to be good.
He brought us to his desk and showed us the scans on his computer screen. He also had other scans of normal brains for comparison. When he pointed things out to me, I was shocked. Nearly the entire left portion of his cerebrum was missing. It was just an empty, black space. He said it was nothing but fluid.
I was shaking. Scared. Crying. I didn't know what to think, and the rest of the visit was a blur. The only thing I left with is a small business card with "Schizencephaly Unilateral" written on the back. We are waiting to go see an pediatric neurologist 1.5 hours away to get a fetal MRI. (Update: the MRI has been scheduled for February 29, 2012)
Needless to say, the past couple days have been a roller coaster. I have been through such a variety of emotions in such a short period of time. So much of it seems like a dream. My eyes are bloodshot from sitting at the computer, researching this extremely rare condition.
Thankfully, not all hope is lost and I have been able to connect with quite a few mothers and groups who have children with Schizencephaly. They are all wonderful, caring people- and I'm so glad the internet has made it possible for me to connect with them.
I have high hopes for Carver. Everything else in his development is absolutely perfect. His heart, organs, arms, legs.... all perfect. He is very active and moves around a lot, and this gives me hope that paralysis may not be a symptom for him. We really won't know much more until we get the MRI.
Until then, we are just staying positive and spending lots of quality time together as a family. Until then, we are carried by all of the support and prayers from family and friends. It means so much to have so many people sending you love!
I'm going to be working on a post about Schizencephaly and what it is. Perhaps that will be a good thing to work on during those times where my mind is racing and I cannot sleep.