Brendon's Smile first met Ryne Phillips (and his parents Amy and Greg) in May 2008 when they attended the St. Louis Cardinals vs. Chicago Cubs series which recognized National Childhood Stroke Month. We were taken aback by a wonderful young man with his beautiful big brown eyes...Since then Ryne and his family have made the trip for the past two years to the Brendon's Smile...Childhood Stroke Awareness Rally and have effectively become part of our extended family.
Amy’s pregnancy was fairly normal. She had high blood pressure (a condition she has even when not pregnant), but it wasn't dangerously high and her doctor wasn't concerned enough to put Amy on rest. Because of her history of high blood pressure, it was assumed that it would elevate to even higher levels during pregnancy. Amy’s first ultrasound was at 21 weeks and everything looked perfect. Amy discovered she did have partial placenta previa (where the placenta blocks the opening) but the radiologist and her doctor felt that situation would correct itself as her pregnancy progressed. Around 28 weeks, as a precaution she had another ultrasound to make sure the placenta previa wasn’t causing problems. Again, everything looked great. The placenta previa had corrected and Ryne was perfect.
Amy and Greg knew she was going to be induced early because of her high blood pressure, so they chose a day at 37 1/2 weeks. On the planned date Amy arrived at the hospital, however Amy had not shown the beginning signs of labor. Medical staff utilized medications to help induce the labor process; however Amy did not experience “typical” labor. She felt one continuous pain as opposed to the peaks and valleys experienced during most childbirth. It was a hard night for Amy – and although she didn't get much rest, she and Greg thought all was going to plan.
That is until...it wasn't going to plan.
Sometime near 4 AM, nurses ran into Amy’s room; one applied oxygen to her while the other watched the fetal monitor. Both told Amy over and over to take deep breaths. Soon after, one of the nurses left to contact Amy’s doctor. Amy was told that her doctor was on his way to discuss a C-Section due to her baby being in distress. The fetal monitor was showing heart rates all over the spectrum. Because the staff did not appear overly concerned, Amy was calm. When oxygen was applied and Amy changed positions as directed, things seemed to improve. C-Section had been a probability from the beginning, so Amy and Greg were neither surprised nor worried.
By 8:05 AM, after conferring with Amy’s doctor as well as a staff OB-GYN it was decided that C-Section would be the best course. She was prepped and the procedure appeared to go as planned. At the end of the C-Section, Amy remembers hearing the doctor say they had dodged a bullet; Ryne’s umbilical cord was wrapped around his neck twice.
As a first time mother, Amy was diligent in learning about baby development. She knew that Ryne would not have acute vision in the first few weeks after birth. Ryne began demonstrating some characteristics, however that worried his grandmother who is a registered nurse. She felt that Ryne might have vision problems due to his apparent inability to “look” at someone. This was their first warning sign. Amy was also concerned due to Ryne’s apparent strong left hand dominance. Because of these concerns, Amy invited Ryne’s grandmother to accompany them to the next doctor’s appointment.
Because of Ryne’s inability to track an object past the midpoint of his body his doctor ordered a CT scan as a precaution against any neurological disorders. Again, since the doctor appeared calm about the procedure, Amy wasn’t concerned. The day after the scan, Amy arrived home from work to find her phone was ringing; it was her doctor advising that Ryan had SURVIVED a stroke.
Amy credits Greg with getting things going in the beginning because, in her words she “fell apart”. Greg set up Ryne’s occupational and physical therapies and arranged for Ryne to participate in the First Steps program.
The Phillips were sent to Riley Children's Hospital in Indianapolis for their neurologist. Ryne underwent a barrage of tests and scans to get a better picture of the stroke and any other potential issues. The testing revealed Ryne had hole in his heart. The hole is typical for a baby while in the womb; it usually closes shortly after birth, but Ryne's hadn't.
An EEG revealed that Ryne’s vision issues were in fact absence seizures. Ryne did not experience convulsions during these episodes, he would simply stare. To combat the effects of the seizures, Ryne was prescribed Phenobarbital; Amy called it a wonder drug. At 5 months, Ryne seemed to “wake up”; he smiled and laughed for the first time!
The Phillip’s neurologist warned of the possibility of Infantile Spasms (IS). There were indications in Ryne’s brain wave activity that IS was present on his EEG, but wasn’t exhibiting any apparent symptoms of it at that point. However at 10 months, Ryne had his first spasm. Initially Ryne would experience only one spasm, however they developed into 18-20 spasms per incident. These spasms have a unique physical characteristic in which the child “bows; in Ryne’s case his hands would go up and his head would go down
To help combat the I.S., Ryne was prescribed Adrenocorticotropic hormone (ACTH) injections. ACTH has its own side effects however; weight gain (18-26lbs), crankiness, and Ryne had to be completely isolated due to the hormone destroying the human immune system.
Amy was forced to give Ryne injections every day for 3 ½ months. Each vial of ACTH cost the Phillips $500; a vial lasted 5 to 7 days. Currently the vials may cost as much as $25,000 if insurance carriers do not offset the price. At the end of approximately 14 weeks, another EEG revealed the I.S. patterns were no longer present!
Ryne was free of seizures until 2008 when he suffered his first convulsion. Unknown to the Phillips, Ryne had developed pneumonia and which resulted in the febrile seizure. Ryne experienced another of these in September 2009, although this one required a trip to the hospital via ambulance.
Today Ryne and his parents face a multitude of challenges; battles with insurance providers, various therapy sessions, 4 hour trips to medical facilities. Ryne also participates in Constraint therapy and Electrical Muscle Stimulation or E-Stim. Ryne attends pre-school which assists him in mainstreaming with his peers. He does face physical limitations, but he knows his ABCs, can count, knows his colors, animals, etc. Ryne is a very wise little guy and like many childhood stroke SURVIVORS is a problem solver; he can work his way out of any 'problem' he finds himself in. Amy says Ryne is incredibly smart, and of course his family is very proud of him.
Ryne is yet one more example that children do have and SURVIVE strokes! For his determination to overcome the multitude of known and yet discovered challenges, his persistence and deceptive strength for such a young man, not to mention his HUGE brown eyes and sense of humor that we at Brendon’s Smile have come to cherish, Ryne has been chosen the December 2009 Stroke Hero of the Month!
