Coping With Cephalic Disorders

I also have a daughter whom my husband and I found out a week before she was born had enlarged ventricles. We feel very fortunate to have learned this information prior to her birth because it would not have been apparent that anything was out of the ordinary when she was born. However, we quickly saw the signs when she was visually tracking by 4 months and could not hold her own head up until 8 months of age. (oh, and she does not have a small head either, but neither does she have a grotesquely large head either.)

Our daughter had an MRI at 3 days old and another at 4 months of age. It was finally determined at 4 months that she did not have hydrocephaly, but rather the specific brain malformation of colpocephaly. She also has a very small corpus collosum (as per the 4 mo MRI). She is now 2yrs +3mos. Her first year of life was very difficult for her. She was in a lot of pain due to violent episodes of GERD (I’m not kidding about the violent part) and slept very little. Her difficulties are a long list, but she is a joy as a child and each of her difficulties lessen with each new day it seems.

In short, Carmen is in the Early Intervention program and has been since about 6 months of age. She receives PT and aquatic therapy as part of PT; OT; DT; DT-Vision; Music Therapy and will soon start Speech Therapy. She responds most favorably to the aquatic and music therapies. She has a great affinity for water and for music.

At some point we expect that Carmen will be diagnosed with a specific syndrome perhaps. She consistently progresses in her development in positive ways and shows great will and determination, but she “tests” more than 50 percent behind the “norm” for her age in gross motor, fine motor, cognitive and other skills.

Colpocephaly in Carmen’s particular manifestation for the way her brain did or did not develop has affected her muscle tone (hypotonia), vision (CVI-cortical visual impairment), mental/cognitive delays, gross motor delays, fine motor delays.

She crawled at 16 months and took her first independent steps at 25 months (again, she is now 27 months) Incidentally she has a walker which she does not use now as she has no interest in it. Carmen is very independent minded. We were told to expect her not to walk before she was 5yr/old. So the lesson there is that no matter what the circumstance or diagnoses, never ever underestimate your child’s ability or willpower, but rather give them as much love, support and encouragement that you can possibly give them. And don’t get discouraged if it takes your child until they are 5 to walk. You will be so overjoyed at the achievement at whatever age they gain that skill and thankful for whatever skills they are able to attain.