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This is a late-in-life child who was a complete surprise. She told K that she really had to talk to herself when she discovered that she was pregnant; since the family has two other children who are in their early teens.
However, she said that the baby had been such a joy once she arrived. She mentioned, though, that about a month ago the infant had suddenly become fussy for no apparent reason. Her pediatrician could find nothing obvious that was causing the fussiness.
Then about three weeks ago, following the weekend, she told K that the baby had suddenly started having episodes when she would get this blank look in her eyes, go stiff, and begin to cry loudly.
"It has me scared to death," the mother told my daughter, "and I'm taking her back to the doctor immediately." Before that day was over, though, her in-home caregiver called her.
The caregiver, who coincidentally had attended a workshop that past weekend on recognizing seizures in infants, stated,
"I think the baby just had a seizure," she said, "and you need to come home NOW."
From there the family went straight to the emergency room where the baby was immediately admitted to the hospital. Within a matter of a couple of days she was having seizures of all types about every thirty minutes.
After tests, including an MRI and a CAT scan , S and her husband got the grim news. The baby had Aicardi Syndrome, an extremely rare genetic disorder.
Aicardi syndrome affects only females. Researchers have identified only between 300 and 500 cases of Aicardi syndrome worldwide.
The condition is caused by the baby being born with no connective tissue between the right and left side of the brain. It doesn't manifest itself until the baby is three to four months old when the two sides of the brain begin to join. The condition is usually accompanied by infantile spasms (seizures), mental retardation, and growths, called lacunae, on the retina or optic nerve.
The exact cause of Aicardi syndrome is not currently known. However, researchers believe it is an X-linked genetic disorder, since only girls are affected, that occurs because of a random, unpredictable mutation.
There is no cure or standard treatment for Aicardi syndrome. Treatment is specific to the symptoms, and usually involves medication to manage seizures and early intervention programs for developmental delays.
Many children with this condition do not live to adulthood, though there have been cases of children living into early adulthood.
Of course the news devastated them. The baby is back home now; and with medication, the seizures are occurring about every six hours.
She is having every type from Grand Mal to infantile spasms.
Her mother told Kenna that her husband is already looking into special schools for their daughter and planning on how she will be cared for as an adult when they are no longer able to provide her care.
"That's his way of coping," she said. "As for me, I'm just hanging on minute-to-minute. I can't get beyond the next seizure."
When my daughter told me this, it just broke my heart. However, it shattered Kenna. She immediately went to the yarn store and began crocheting a delicate baby blanket for this sweet baby.
This family has some tough and possibly even worse heart-breaking days ahead. I hope you will think of them when you communicate with whatever higher being with whom you communicate.
For more informatio on Aicardi Syndrome, go to:https://www.hmc.psu.edu/childrens/healthinfo/a/aicardi.htm
