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 6, 2012

Carver's Shunt Surgery

On the left, you can see an image from Carver's MRI on February 29th (when I was about 29 weeks pregnant and about 2.5 weeks before he was born.)

As you can see, he is missing large parts of his brain, which have been replaced (and/or compressed by fluid pressure.) The neurosurgeon believes that Carver's brain was damaged during pregnancy, and was therefore replaced by fluid.

From my research, I think it also might be possible that he has more brain tissue than we can see here, but it is simply under pressure. The brain is much like a sponge, and it can compress down very tightly when under pressure. However, when the pressure is relieved, it will expand out again.

A few days after Carver arrived, his head size began to grow rapidly. The doctors wanted to monitor it closely, because it was an indicator of hydrocephalus (which means the spinal fluid cannot drain properly and creates excessive pressure in the skull.) After a week or so of monitoring, the neurosurgeon decided that there was pressure building up in his skull and he would need a shunt placed into his brain.

A shunt is a tube that is placed in the skull and runs down into the abdominal cavity. It drains the fluid from his skull and allows it to be reabsorbed by the body. It is permanent, and will help drain this fluid for the rest of his life.

They decided it was going to be needed, and so they scheduled the surgery. Today was the big day.

Daddy stayed with Carver all night. They started him on an IV at midnight, and discontinued his feedings for the surgery. They took him in at 7:30 in the morning after all of his blood-work and labs were complete. They were able to get him under anesthesia easily, and got him on the ventilator. The surgery took a little over 2 hours.

The surgery went very well. They placed the shunt on his left side because it was the largest and had the most fluid. They were able to insert about 3-4 years' worth of tubing, which means we won't need to go back and get a bigger shunt until he is 3 or 4 years old. He was able to recover well, and was off of the ventilator and waking up within an hour after surgery. I'm so proud of our amazing little miracle!

He has been groggy today since they have him on pain medications, but has been alert and focused. As the day progressed, he was more irritable, but was sleeping well. Even though he was getting nutrients through his IV, he was still hungry. And unfortunately, they won't allow him to eat by mouth until tomorrow. It makes me so sad... I wish tomorrow would hurry up and get here!

On a bright note, his doctor says that once he is recovered, she is going to up his nursing times to 3-4 times per day. This is great!! She was so impressed by his age and ability to do so well with nursing. Hopefully this means he will be able to come home sooner than we think! Here is a photo of our little angel right after he got out of surgery... he is such a fighter!
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3 comments:

  1. AnonymousApril 11, 2012 at 9:08 PM

    Wow! What a blessed Easter Miracle on Good Friday!!! SO happy he is doing so well! What a little fighter indeed! I had no idea that such surgery was even possible. That is a great diagram. Poor baby; it must hurt! I hope he is feeling better and nursing up a storm very soon! ((HUGS)) Will keep on praying for you!

    FILM

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  2. AnonymousApril 27, 2012 at 9:28 PM

    My Schiz kid had the opposite problem ,microcephaly (small head) Prayers to Carver

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  3. UnknownApril 18, 2017 at 5:33 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)

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