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: carversjourney@gmail.com

Carver's Brain

Carver's Brain

Monday, May 14, 2012

First Shunt Replacement

Well, we finally got discharged from the hospital on Friday. I just realized that yesterday (Mother's Day) was my original due date. Maybe this is a sign that we will be home from the hospital for good!

Anyway, Carver is home now with his new shunt in place. It turns out that he had a staph infection on his first shunt, and it needed to be replaced. Sadly, shunts (as with any hardware in the body) have a very high risk of infection. Unfortunately, this means that the infection will likely come back again, since it is difficult to get the bacteria out of the plastic. If the infection were to return, it would only be millimeters away from his brain and spinal fluid. If that were to get infected, it would be an absolute nightmare for him. We had no choice but to remove it. 

Old shunt removed, EVD in place
After a few days of being admitted, they removed his old shunt and put him on an EVD (external ventricular drain). This allowed him to get rid of the infection and enabled his spinal fluid to still drain. After a week of antibiotics on the EVD, they were able to put in a new permanent shunt.
EVD removed, new shunt in place


Once all of his cultures came back clear without infection, they let us go home to heal up. I am so happy to be back home. Hopefully we won't need to go back for a very long time!

It was really hard going through this in the hospital with him. He has had to endure more operations and painful procedures than many of us experience in a lifetime. I understand that this might not be the last time we have to go to the hospital, but  I surely hope that it is the last time in a long time.
 
On a bright note, Carver has been growing well and put on a full pound in just 3 weeks! He has been happy and charming as always... even going through all of this. He is such an inspiration.

Thank you to all of our friends and family who have shown us support and love, especially during this latest endeavor. Carver feels your love and so do we. It helps us get through the tough times. Thank you.

Now it's back to going home, sleeping, playing, eating, and growing. Carver will start physical therapy as well as occupational therapy this week, as well as getting in to his neurologist to discuss some possible seizure activity that might be starting. We want to make sure that we are covering all bases and helping him out as much as possible by catching things early.

We will be sure to keep you posted!


On our way home!





Posted by at

3 comments:

  1. AnonymousMay 17, 2012 at 7:25 AM

    Yay! So gorgeous! He is just squishable! I am SO HAPPY he made it out relatively soon and is back at home, safe in your loving arms! Remember, God is watching over him! (and you) He truly IS a miracle baby, many times over!

    FILM

    ReplyDelete
  2. Zhen XiJune 19, 2012 at 8:12 AM

    hi!

    you have a beautiful baby! :D

    I am really grateful that you are posting about Carver. I have a baby boy(Boo Zhuo)with Schizencephaly too. Your updates make me more prepared and inform about this condition.

    Really a Big Thank You!!!

    I'll pray for Carver too! Hopes he grows up with minimal complications!

    All the Best to you!

    ReplyDelete
  3. UnknownApril 18, 2017 at 5:32 AM

    My son 23 has been a victim of Chronic SCHIZENCEPHALY for many years. I am excited to share this testimony as i have been sad and confused for the past 23 years of my son been a victim of SCHIZENCEPHALY. Anti-psychotic medicine they induce psychosis, never helped rather worsened the situation, Homeopathy medication is good but has a lot of limitation too. I looked for solution everywhere all to no avail until I contacted a Herbal Doctor whose medicine works perfectly for him, my son situation has greatly improved which is what I have always wanted. If you have related problem, don't lose hope, contact him (ronniemd70@gmail.com)

    ReplyDelete

Subscribe to: Post Comments (Atom)