Evan’s Story

Evan, In-utero Stroke SurvivorIn September 2010, our second son was born after a troublesome pregnancy and c-section delivery. The medical staff had a rather difficult time getting Evan to respond at birth, noting that the lower half of his body was blue, which to the pediatrician on call, appeared strange. Finally, we heard those first cries, and a nurse informed us that we had a beautiful red-headed little boy.

While I was recovering in the post-surgical room, desperate for help with my increasing pain, my husband and mother took over the duties of initial cuddlings and feedings. Still concerned about his purple extremities, we questioned the nurse repeatedly. Even she appeared stumped. A few hours later, the nurse had successfully obtained a medication from the anesthesiologist that would dull my then unbearable pain; the only downside to this medication was its sedating effect.

Through my medication-induced haze, I recall hearing my husband ask my mother, “Does he look like he’s breathing?” to which she replied, “No.” A desperate call to the nurse followed. This scene repeated itself three times before pediatric staff arrived to take Evan to the NICU.

Unfortunately, I had to be taken to my room, for I was still being monitored following surgery. That meant my husband and I had to split, me going off to my room with no idea of what was happening, and him going off to be with our son. It didn’t help that I couldn’t think straight because of the drugs. What exactly was happening to my child?

After hours in the NICU, my husband finally returned. There was still no explanation for Evan’s breathing difficulties. My husband is a very optimistic, glass-half-full kind of guy, and by the look on his face, I could tell even he was defeated by this mysterious prognosis. We were in trouble.

A long night

After a long night filled with tears, prayers, and questions, a neonatologist visited us the next morning. They suspected one of three things was wrong with our son: 1.) He had suffered some sort of brain damage from the vacuum extraction (yes, that’s right, a vacuum extraction for a c-section); 2.) He had meningitis; or 3.) He had suffered a stroke in utero. As I had been admitted a week or two prior to delivery for limited fetal movement – a potential sign of infant stroke in utero – the doctors concluded that this was a very real possibility. Following a brain scan, their suspicions were confirmed. Evan had suffered a stroke anytime within the two weeks leading right up to delivery. He had suffered massive left-side brain damage, which was causing him to seize. Hence, his breathing difficulties were a result of apnea, a manifestation of these seizures.

The doctors told us to brace ourselves for a rough next couple of days. Typically, they said, infants who have suffered a stroke will have numerous seizures in the days following birth; these were to slowly taper off within a week or so. They loaded him up with phenobarbitol, hooked him to countless machines, and we waited. Ten days of the worst waiting of my life. The day after my surgery, I was determined to go down to the NICU to see Evan despite the immense pain. I was loaded into a wheelchair and driven down there.

Many more tests were run, and many more days passed, until finally, we could take him home (the day before my birthday – what a great gift!). Our elation mixed with fear, for as much as we wanted him home, we were terrified that he would stop breathing in the night, and with no monitor to warn us, we would lose him.

In-utero Stroke

In the aftermath of this harrowing ordeal, we learned some very basic things about infant stroke, the most frustrating of which is that little is known about its causes and no definite prognosis can be given for the child’s future. Some things were certain: Evan would have right-side motor difficulties. He would be left-handed and would have limited use of his right hand. He would walk with a limp. He would be at greater risk for cognitive impairments,

including ADD and learning disabilities. It was all too much. Childhood and adolescence are hard enough. It’s not fair that my child must have additional challenges! What if he’s severely impaired? How will we provide him with the care he needs when we both have to work to put food on the table? I had to be put on anxiety medication to cope with these and other racing thoughts.

The good news

Thankfully, I am pleased to report that Evan is currently a happy, socially and emotionally well-adjusted baby with very minor developmental delays. We have not noticed any seizures since bringing him home. He is regularly seeing a handful of medical professionals: his pediatrician, pediatric neurologist, rehabilitative medicine specialist, and physical therapist. We are weaning him completely off his seizure medications. While he does exhibit right-side motor limitations, he is doing much better than we ever expected or imagined given what little information we had to work with. I am no longer having panic attacks about Evan’s condition. For now, life is good! We plan to keep it that way by “not writing his story for him” as my mother once said, but rather by presenting him with every opportunity to flourish and grow into a healthy child.

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