Microcephaly: Rare Children’s Disease Causes Small Head
After many tests it was determined that my son had a condition called microcephaly. The condition is known by the small size of the head upon birth. With the condition, the brain fails to develop properly or stops growing completely, some time in the womb. The most frequent cause of the condition is genetic abnormalities that interfere with the development of the cerebral cortex, I was told.
Often associated with Down’s syndrome, chromosomal syndromes or neurometabolic syndrome the condition can be caused by rubella, chicken pox, toxic chemicals, and drug or alcohol abuse. Although the actual reason for my son’s abnormal head growth was never determined absolutely the results were the same as most microcephalic children: mental retardation.
Other conditions associated with microcephaly are speech and motor problems, facial distortions, dwarfism, hyperactivity, seizures, coordination and balance issues and other neurological problems. My own son’s height reached 5′, his head at 27 years is but 15″ in circumference, he has frequent seizures, but no facial abnormalities. He can also do many things as if he were truly 27 years old, but turn around a few minutes later and act as if he’s 4.
On the one hand, my son can mow the grass with a riding lawn mower, make small meals like sandwiches, take care of his own personal hygiene, and remember many daily routines. On the other hand, he was never able to learn to read but a few words, he speaks very loudly and is extremely repetitive, is as stubborn as a mule if he doesn’t want to do something he’s told to, but is a very loving and caring individual.
There is no treatment for microcephaly which will help any microcephalic child’s head grow to normal size. Instead, treatments are geared towards improving neurological aspects and learning issues. Early childhood intervention is helpful particularly programs that feature intensive speech therapy as well as physical therapy. Medications are almost always required for some aspect of microcephaly, either for seizures, hyperactivity, neuromuscular problems, or a combination of those.
Some microcephalic kids will go on to have only mild mental retardation. Others can be severely retarded. My own son falls somewhere in between those ranges. Occasionally, a microcephalic child will develop normal intelligence levels and be able to keep up mentally and physically with other kids their own age. But, these kids often have disfigurement of the face and skull that can lend to teasing and other cruelties from kids, and sometimes anger issues with the microcephalic child.
The parents may need to seek counseling, not only for the child, but for themselves as well. Mothers, in particular, tend to have feelings of having done something wrong during pregnancy or anger issues about the situation. Fathers sometimes blame the moms
If you have a loved one that was born microcephaly check for centers in your area that can help. Work with your child on the skills he or she lacks the most and you’ll be surprised at how much they can learn. Don’t despair and stress that your child will die at any early age, never learn to take care of himself or that he’ll otherwise be a burden. For the most part microcephalic kids can learn a variety of skills and self-help techniques that will allow them to do a lot for themselves.
In our case my son started in an intervention program at two years old – which I credit for helping him learn to help others, take care of his own personal hygiene, and to have goals. He runs each year in the Special Olympics marathon and has many 1st and 2nd place ribbons. During one race he stopped halfway around the track and waited on the others to catch up with him before finishing the race! He hated the thought of leaving his friends behind.
My son can use tools and operate a rechargeable screwdriver or drill, use a riding or push mower, operate a go-cart, shave (electric razor only), tie shoes, tell time, count money (some limitations), use the microwave (pre-set buttons only), do laundry from start to finish without help, remember without being told what the day and date is, remember his siblings’ birthdays, find his way around town and back, and go into a small store to purchase one or two items by himself.
In addition, my son has an eerie knack for knowing things that he has no way of knowing. For example, when overhearing there was a wreck up the road from us, he began discussing it as if he could see the whole scene. He named the colors of the vehicles and mentioned that one was a truck. The newspaper article later revealed that he was correct. He’s famous for saying things like “you’d better get your tire fixed” the day before you have a flat or, “I’d like a new Willie Nelson CD” just before a Willie Nelson CD commercial comes on tv. I’ve seen him do things like this for so many years now that it’s become old news, but it is a little eerie when we drive by a particular house or building and he says “There’s ghosts in there” or tells us that our dearly departed dog sleeps beside his bed at night!
If you’re the parent of a microcephalic child you’ll laugh, you’ll cry, you’ll pray and you’ll curse, but never give up hope. They will surprise you everyday and love you more than anyone else ever could.
