Our daughter Megan is now 10, going into the 5th grade and continues to show every sign of normal development; physically, mentally and emotionally. However, she was diagnosed with ACC (Agenesis of the Corpus Callosum) while in-utero. ACC is described as the congential absence of the brain's corpus callosum, a formation of nerve fibers and connections that bridge the two cerebral hemispheres. Once thought to be a rare condition, ACC has been turning up with increasing frequency ever since the widespread clinical use of MRI to examine the living brain, and ultrasound during pregnancy.
Her story begins in 1998, as my ex-wife and I were getting packed to go up to my parents house for the Thanksgiving holiday. The phone rang. It was the obstetrician on the phone, following up on an ultrasound from the previous week. He said that they had found an abnormality in the baby's brain and that he had set up an appointment for us to see a perinatalogist in Chesapeake, VA (Dr. Steven Warsof) to get a more accurate ultrasound. What horrible timing! That weekend was one of the worse weekends or our lives. After several excrutiating days of waiting and waiting, the ultrasound was performed. What Dr. Warsof told us was that as far as he could see, the 3rd ventricle of the brain appeared to be superiorly displaced, which would indicate a premature diagnosis of ACC, but that he would know more in a month or so after a second ultrasound. Everywhere we turned for information, we found nothing but horror stories. The Internet provided us with nothing but images and stories of children that couldn't sit up by the age of 2, or talk by age 5, or walk by age 8.
A month passed and we went to see him again. This time he said that what he saw before was still there, but that it had moved posteriorly a couple of millimeters, changing the previous diagnosis to an aracnoid cyst, since ACC does not move about the brain. We were told that an aracnoid cyst would eventually need to be drained with a shunt. Though more hopeful, he still wasn't 100% sure and he told us all we could do was wait until the baby was born and do another ultrasound then.
For the following two months we had nothing but sleepless nights and fears that little Megan wouldn't be normal, making the rest of the pregnancy miserable for my ex-wife and I. We sought advice and support from a couple of neurologists and different sources, such as the ACC Network , part of NORD or National Organization for Rare Disorders (which is a great organization to learn about the condition) so that we would know what to expect and prepare for, once the baby arrived, i.e. special care, feeding, etc. Only after Megan was born, through ultrasound performed at the Children's Hospital of the King's Daughters in VA, they found that whatever was there before, was there no longer. In fact, the brain looked completely normal. The doctors decided that the cyst was most likely re-absorbed by the brain. The relief and elation were indescribable.
As expected, she's growing and develping like any other little girl, physically, cognitively and verbally, alongside myself, her stepmom, her 12 & 8 yr old sisters, and 10 & 9 yr old brothers.
I promised myself that one day I would post Megan's story to let people know that not all stories have predicted endings. In my case, Megan is very fortunate and by no means am I trying to undermine the gravity of the condition. However, if I had found just
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