Life After Stroke: Federico, Perinatal Stroke
Translated from Italian
A chair in a waiting room. Here’s what I remember from the moment when, during the ultrasound of the eighth month, the doctor told us that “something was wrong”. I remember that chair, where I could not sit, waiting for the doctor to write the report and call us back in his room.
After the first diagnosis, there have been many other chairs in other waiting rooms. First, during the last weeks of pregnancy, then after the birth of Federico.
Those last weeks of pregnancy weighed like a boulder on my stomach, because my baby had been bad in my womb, because I, his mother, had not been able to protect him. And now what would have happened? What problems would our baby have? The fear was mixed with the desire to know him, on the one hand I wanted to keep it inside me, to avoid knowing, to avoid making it grow with some problems, but on the other I wanted to hold him and apologize.
The birth was a real nightmare: an attempt at natural birth but too medicalized, with too many threads that monitored him and me, too many doctors who entered and left the room, too much pain. At one point, Federico turned his head and did not seem to want to go out. Maybe he too had enough of it. You could not risk having more suffering during delivery, so the gynecologist decided to do an emergency caesarean.
After the birth, they let me see Federico for a few moments, before going into intensive care to check what damages he had from the stroke. I managed to see him only 24 hours later, 24 hours of suffering after caesarean section. But there was dad with him, at all times, when visiting hours allowed. When I managed to hold him in my arms, I cried with happiness. For a moment I stopped thinking about “what would have been”. After three long days, finally Federico was able to come into the room with me, but the visits of the doctors and the various testing he had to do kept him away from me for too long. And when he was with me he cried, he cried a lot. And I did not know how to do it. How to handle anxiety, the fear of being a mother for the first time and the terror of not knowing what a baby it would be, what problems he would have had. And if his crying hid a suffering that I did not understand?
When we finally got home, Federico kept crying. And I with him. Fortunately, there were check-ups, which reassured us because he grew up well. And then there was the magnetic resonance, done at two months, which allowed the doctors to understand what problems he would have in the future. They explained that the area of the brain affected by the stroke caused a hemiplegia from the left side, that would have had problems in the movement of the left side of the body. And then maybe epilepsy, problems in language, problems in sight, cognitive problems and attention.
The neurologist was relieved by the magnetic resonance report, but we were confused and afraid. But we relied on his experience and did everything he advised us.
And so we started doing physiotherapy twice a week, 20 minutes on the highway from home. At three and a half months we embarked on a path of physiotherapy that continues even now, at 4 years, changing three therapists due to the complicated organization of the bureaucracy.
Being a parent of a child that is followed in every gesture is challenging, physically and especially mentally. A little late but I realized that I needed a vent valve too, and then I started a journey with a psychologist, suspended for lack of time, but I should resume soon, because it was really important. And I started working again, with less enthusiasm than before, zero career chances. But I’m only interested in leaving the house, thinking about something else for a few hours, talking about frivolities at the coffee machine and going back at home more charged. Managing everything is really complicated, but the mother and father of a child who survived a stroke acquire some extra super power. The first is to put priorities in life in order. And enjoy every single moment, even those mornings together to go and get back from physiotherapy, that ‘healthy’ children cannot have, because at that time they are already at school.
Although Federico now gives us confidence, because we know that with the right amount of will and teaching we will help him find his way to autonomy, we continue to think what is best for him, and our life has changed, we have changed. We know that a hurricane can invest in it as a family, but we embrace each other and survive.
Thank you to Fight the Stroke for their help in gathering stories from Italy!