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

Friday, April 13, 2012

Coming Home Soon?




Today has been such a joyous day!! Since Carver has been doing so well nursing and feeding by bottle, the NICU doctors decided to go ahead and try to feed him that way at every feeding. This means that if he does well all weekend- he will get to come come at the beginning of next week!!

We are beyond excited to be so close to having our little boy home with us. His brothers have been asking and asking about him, and they are very excited to meet him, as well.

Carver has done such an amazing job. Normally, NICU babies do not go home until their actual due date, but Carver will be coming home a month before his due date! While the past 4 weeks have been long and hard, he has defied all of the odds and has done everything with unimaginable strength.

It's amazing how much he has been growing. Currently, he is 5 lbs 3 oz and over 18" long! That is quite a growth spurt from the 3 lbs 14 oz and 16" long merely 4 weeks ago. He is eating wonderfully and developing perfectly. He soared through his shunt surgery and it hasn't brought him down one bit. His head circumference has already dropped about 1 cm of fluid pressure since the surgery.

Hopefully, by next week, he will be at home with us. It is so surreal. I can't believe he is going to be here with us every day! I'm looking forward to spoiling him with hugs and kisses every moment I get.
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3 comments:

  1. AnonymousApril 14, 2012 at 9:56 AM

    Congratulations on being so close to such a significant milestone.

    ReplyDelete
  2. MargaretApril 15, 2012 at 10:46 AM

    Thinking of your family... I'm so glad he's doing good!

    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

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