When you’re going on a scary journey, it sure helps to have a dedicated guide, someone who looks out for your best interests and explains, whenever possible, what’s ahead. For my family, that guide is Kathleen Filograna, MD, our pediatrician.
We began our relationship with Dr. Filograna in 2007 when I had triplets. We were lucky: They were generally healthy, but — unsurprisingly with three babies — we spent a fair amount of time at the CHOP Primary Care, Indian Valley practice, near our home at the time in Telford, PA.
Andrea joins our family
Andrea (second from left) with her siblings Mason, Madison and Abigail.
When our triplets were 2, our surprise baby, Andrea, was born. My pregnancy was easy and everything went smoothly on the day she arrived — full term and beautiful.
For the first few months, Andrea reached her early milestones right on schedule. Her cuteness drew compliments everywhere we went. We were so blessed to have our family completed by Andrea!
But somewhere around 5 months, the nagging feelings began. We started to notice Andrea was favoring her left hand and her clothing hung differently on her right shoulder. Naively, we thought she was just very left-handed. Over the next month, oddities began adding up, and I made a mental note to address it at her upcoming 6-month checkup.
That was until the day she grabbed her right hand with her left to use it as a teething toy, as if her right arm was an inanimate object. That was the flashing red light that told me something was very wrong.
A lifelong journey of care
I called our CHOP Care Network office and spoke with a nurse I knew. She called Dr. Filograna at home. The nurse called back within an hour and scheduled us to come in the next day, a Saturday. I knew this was really serious.
On a whim, I mentioned to my husband that Andrea acts as if she’s had a stroke. That didn’t lessen the shock when Dr. Filograna said stroke was a possible diagnosis during our appointment early that next morning.
We were sent for an MRI on Monday at the Imaging Center at CHOP's Specialty Care Center, in King of Prussia.
Dr. Filograna had emailed the prescription to the Imaging Center, provided copies of the paperwork and emphasized to me that the MRI should be done “with contrast.” I didn’t know what that meant, but when the staff at King of Prussia didn’t think it was necessary, I politely demanded they follow our pediatrician’s orders and followed up with a call to Dr. Filograna. After she spoke with them, the MRI was done with contrast.
I was grateful that Andrea was spared the possibility of a second sedation for a second MRI — because I was prepared by Dr. Filograna, and she stepped in to clear up any confusion.
Even though she wasn’t scheduled to work, Dr. Filograna called the following morning so she could review the MRI results with us personally. Unfortunately, the MRI confirmed our suspicions; Andrea had had an ischemic stroke. Before telling us, Dr. Filograna had already spoken with the CHOP Stroke Clinic to learn the road we would be taking. She got the orders for blood work the neurologist would need so we could take care of it before our Stroke Clinic appointment.
Since CHOP’s Pediatric Stroke Program is one of the most respected in the country, it’s not surprising there was a two-month wait for an appointment. Still, I was at the height of stress and emotionally exhausted, so I was not very understanding about the wait. I needed answers now! I was full of worry and questions only a neurologist could answer.
Frustrated, I called Dr. Filograna for a recommendation of another neurologist. She graciously called the Stroke Clinic and arranged for us to see a neurologist (not the therapists) the following week. Again, she went above and beyond, showing me she understood how much we needed answers.
Follow-up with the Stroke Clinic
Since that first visit five years ago, Andrea has been followed by the Stroke Clinic, plus Neurology and Neurophysiology. The specialists share Andrea’s treatment plans — which include physical, occupational and speech therapies, and twice-daily medication to control her epileptic seizures — with Dr. Filograna, who we still see for routine illnesses and checkups.
The road hasn’t been easy, and I know there will be more challenges in the future, but I know we’ll get through it with the help of CHOP and Dr. Filograna, our steadfast partner in this journey.
As for Andrea, she’ll begin kindergarten in the fall.
Yes, she had a stroke and that is a part of what makes Andrea who she is. But the stroke doesn’t define her. She’s running, riding her bike and just enjoying life. Her smile still melts our hearts.
By Jill Conti, June 2013