At 34 weeks gestation, we learned of abnormalities on Kendle’s brain which the doctors thought was the result of a brain hemorrhage in utero. However, an MRI conducted immediately after birth revealed agenesis of the corpus callosum. What this means is that the structure of the corpus callosum (the bundle of nerve fibers that serve as the primary communication pathway between the right and left hemispheres of the brain) did not form. This finding triggered many more tests which brought us to the very rare diagnosis of Aicardi Syndrome. This disorder only occurs in girls or boys who have 2 X chromosomes (Klinefelter Syndrome). Babies develop typically until 3-5 months of age until seizure activity disrupts development.
Kendle began physical therapy through Babies Can’t Wait immediately and was assessed to have normal muscle tone and better than average head control. But at 3 months of age, her seizures started. Within 24 hours, Kendle lost everything. She was hypotonic and could not hold her head up. She was having upwards of 20 cluster seizures per day, many of which lasted 45 minutes. Because of the types of seizures she had, we were given two options for medication: one had a risk of permanent vision loss and the other had a high mortality rate. We chose vision loss. Under this medication, the FDA required a sedated test every 3 months. The sedation actually increased her seizures. Yes, you read that right: in order to reduce her seizures, we had to subject her to more seizures according to FDA regulations. The worst part was, none of the doctors really understood what he findings of this test meant! Luckily, this medication was effective in controlling her seizure activity by reducing them to 5-7 per day lasting anywhere between 5-15 minutes and Kendle began to reach milestones again. We have tried several other medications that had terrible side effects. She was labeled “failure to thrive” due to lack of appetite, was extremely floppy and lethargic – many people used the painful description of calling her a zombie.
As Kendle’s parents, we have had to make some tough decisions to balance seizure activity and quality of life. At age 3, she is currently on a very low dose of medication that can cause hallucinations and a potentially deadly skin disorder called Steven Johnson Syndrome. At this low dose, Kendle is alert and she’s developing as she has learned to walk and showing signs of early communication abilities. Yet, the trade-off is that she continues to suffer 10-20 minutes of seizure activity daily. Like any parent, we want more. Other girls with Aicardi Syndrome have shown great improvement with cannabis oil and we would desperately like this opportunity for our daughter. Thank you for showing your support in helping give hope to Kendle and so many children like her!