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

Tuesday, February 7, 2012

Initial Ultrasounds


Today, I called the Perinatologist (a maternal-fetal medicine specialist) who gave Carver his diagnosis last week. I wanted to see if they could print out some of the brain scans from the ultrasound so I could have them and keep record of them. They were able to go back and print out 3 of them for me (even though I wish there were more.)These are his scans on the left (with a normal 25-week brain scan on the bottom.)

You can see the white circle (which is his skull) and where there is missing brain matter (the black fluid-filled spaces.) The left side has much more fluid, but it does look like there is also fluid on the right side. This would lead me to wonder about the "unilateral" dignosis the Perinatologist gave me last week, but it does like it might just be an enlarged ventricle. If so, I have high hopes that it can resolve itself on the right side.

This being said, there is still much we don't know. Ultrasounds are nowhere near as detailed and informative as an MRI. We really won't know anything until we are able to get the MRI results, which will (hopefully) be sometime in early/mid March.

I was able to meet with a wonderful mother who has a daughter with Schizencephaly today. She came up from OKC and we went to lunch. It was very nice to get to talk with her and meet her- she is an extraordinary person! She gave me the name and number to her Perinatologist in OKC, so I decided to try and get a referral to go get his opinion, as well. I'm waiting to hear back from my OB.

I figured it would be best to get as many opinions as I could, especially since the specialist here in Tulsa admittedly didn't know much about the condition since it is so rare.

Looking at the brain scans today makes me kind of sad. Everything looks like such a mess and has no order. But apparently, that is what many of the others in the support group say it will look like. There are no 2 cases that are the same when it comes to these types of brain deformities, so it's really just a "wait and see" type of thing.

I'm really thankful right now for the new friends I've met in the support groups, as well as my husband and family. They have been so supportive and caring, and it really helps to have such a great support group. Much love to you all!  <3
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2 comments:

  1. tifpennyFebruary 7, 2012 at 9:04 AM

    I pray every night for you and Carver! The lord has blessed you with this special little guy for a reason and I think you will be the perfect mother for him. Love you guys

    ReplyDelete
  2. JuniorFebruary 29, 2012 at 9:37 PM

    Carver and your family are in our prayers.
    I am from the hydran support group.

    ReplyDelete

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