Department: Speak Up: Isaac's Stroke
Marsha Edens live in Chesnee, South Carolina with her husband, Mike, and two sons, Isaac and Caleb. She works with Family Connection of SC and also speaks to churches, support groups, and schools about their family's testimony. Marsha is anticipating the publication of her first book, An Ambulance with Wings, to be released this fall.
My son Isaac burst into the world on November 26, 2002. He appeared to be a perfectly healthy 7-lb., 13-oz. baby boy. After delivery via an emergency C-section, Isaac began having breathing problems. He was sent to neonatal intensive care for observation for a few hours, but hours quickly turned to days. Eventually, the doctors discovered that his breathing problems were due to apnea spells caused by seizures. Isaac was put into a drug-induced coma and given three seizure medications to help him recover. In just the first hours of life, Isaac was given CT-Scans, MRIs, EEGs, a spinal tap, and a blood transfusion.
The following day, the pediatric neurologist confirmed the devastating news: Isaac had suffered a massive stroke in utero, during the seventh month of pregnancy, due to a shortage of platelets and under-developed blood vessels in his brain. A stroke? We thought that only older people suffered strokes. As we now know, almost 4,000 children a year have them as well. (For more on childhood stroke, visit kidshavestrokes.org.)
As a result of the stroke, 60 percent of the left side of Isaac's brain was damaged and five percent of the right side. Diagnosed with cerebral palsy, Isaac came home on seizure medication with a prognosis that was anything but hopeful. Isaac started rehabilitation at only 13 days old and continues to receive physical, occupational, and speech therapy. He suffers from hemipeligia (one-side muscle paralysis) on his right side, mostly in his hand; but by the power and grace of God, Isaac does almost anything a typical four-year-old does. People rarely notice that he has any weaknesses at all.
Isaac was doing great with only a few tiny seizures since birth until—out of the blue—they worsened last year. His seizures had begun “kindling” and causing life-threatening breathing problems. (Kindling refers to repeated low-level electrical stimulation to the brain that causes a permanent increase in seizure susceptibility.) Within four months, Isaac was airlifted three times, put on life support twice, stopped breathing numerous times, and was hospitalized in pediatric intensive care five times for seizures that each lasted over an hour. We tried many different medications, but none of the combinations were effective. Once Isaac's body failed to respond to the medications, his neurologist had him referred for epilepsy brain surgery.
On March 15, Isaac underwent his first surgery, a four-hour procedure in which a series of “grids” were placed directly on the brain to locate areas damaged by the seizures. These grids were left coming out of his little head for nine days while his doctors monitored seizure activity. On March 23, Isaac underwent his second surgery, lasting almost six hours, to remove the grids and the seizure-damaged areas. Isaac's surgery is called a partial left hemispherectomy. It involved his neurosurgeon removing the remaining temporal lobe, most of his motor strip (which runs down the side of the frontal lobe of the brain and controls movement), and a small portion of the parietal lobe, and then disconnecting the remaining frontal lobe. Isaac only has function on the left side of his brain from the very back lobes, as he is now missing about 70 percent of that side (partly from stroke and partly from surgical removal). However, he continues to recover from surgery with no additional deficits, probably because he was so young when the damage occurred; as a result, his brain was probably “plastic” enough to transfer information to other areas. Today, Isaac is the same, only better, because he has a new clarity of mind not cluttered by constant seizures. We are thankful for the life-saving surgery that made this possible.