Lisa was accustomed to giving birth to big babies.
Her first child was a robust 9# 5 oz at the time of delivery. Her second child was a strapping 11# 8 oz by the time she met the world. But when her third child, Bear, was born, he weighed 12# 11 ounces just prior to his descent down the birth canal. Because Bear was such a big baby, a relatively common but potentially dangerous complication occured during his delivery that would affect his life forever. His fleshy shoulder became lodged against his mother’s pelvic bone. Although Bear’s infant circulation separated from his mother’s as the birthing process happened, his body could not get out to receive his first life-giving breaths.
When Lisa’s obstetrician determined that a vaginal delivery was not possible, the pair was rushed to Cesaerean section. Within moments, Bear was extracted from his mother’s womb — limp, blue, and already showing evidence of seizure activity. The neonatal team present in the delivery room performed CPR, administered medications, and resuscitated Bear for twenty minutes. Lisa, a nurse in the neonatal intensive care unit herself, remembers that at one point the neonatalogist who was guiding Bear’s resuscitation consisdered “calling it,” and letting Bear slip away. Yet, with the determination and strength that Bear would display throughout his life, the pediatrics team was able to regain a steady heart beat after 20 minutes of resuscitation. This was the first of a lifetime of miracles.
Although Bear was safely outside of his mother, his neurologic prognosis was grim. After his birth, Bear was placed in a drug-induced coma to quell further seizures. As the medications were lifted, he was noted to have low muscle tone, decreased reflexes, and absence of a suck/swallow reflex. A tube was placed in his stomach to provide nutrition and later he had a more permanent gastrostomy tube placed. Bear was hospitalized for the first six weeks of his life. He left with a diagnosis of “severe hypoxic ischemic encephalopathy” related to birth trauma and a future that was uncertain.
“Bear became everyone’s baby,” Lisa remembers. Her father, a surgeon, and her mother, a nurse, babysat frequently and helped care for him when needed. Other family members and friends helped pitch in to give rides to the doctor or hospital if needed. Everyone cheered when Bear met each of his developmental milestones — although later than typically developing children — one by one.
When Bear was three, he had his first generalized seizure. Because the seizure was prolonged, Bear had an evaluation for infection in the emergency room after the seizure. He was not officially diagnosed with epilepsy, however, until after he had another generalized seizure approximately a year later. Bear was started on Tegretol for control of his seizures.
Soon after Bear’s official diagnosis of epilepsy, he started participating in school. The aide that was assigned to work one-on-one with him noted other subtle seizure activity throughout the day. Repetitive chewing on a sleeve, staring off into space, and smacking of lips were determined to be seizures. Keppra was added and Bear’s seizure activity decreased.
Since Bear’s diagnosis with epilepsy, Lisa has learned to identify the triggers for his seizures. She’s recognized that sickness is a trigger, fatigue is a trigger, and abrupt changes in schedule are a trigger. She also realizes that Bear is constantly at risk, since he attends schools where viral illnesses are a constant reality. As a result, Lisa reports that she is “constantly checking on him” to make sure that Bear is OK and “someone is always with him.” Lisa states that Bear was invited to some friends’ houses in the past for play dates after school. Once she explained to the other parents Bear’s history of seizures, he wasn’t invited back.
In many ways, Bear is the living example of a miracle. He has gone from a small infant who almost didn’t survive neonatal resuscitation to a strapping young man who likes to bike, run, and play with his siblings. He evolved from a baby without a suck/swallow reflex to a toddler with a G-tube to a boy who eats everything in sight. Yet Bear is still susceptible to a multitude of seizures that can ruin a day, a week, a lifetime. In so many ways, Bear is miraculous, yet a cure for seizures sometimes even alludes those who have obtained the unobtainable.
In Lisa’s words, “epilepsy is like an intruder in our house with a gun. You never know when it’s going to go off, and you never know how it’s going to affect you.”
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