Life After Stroke: Leonardo

Suddenly we stopped.

He was intent on looking at the wall that led to the sea. Or at least, so it seemed to me at that moment. Maybe he saw something interesting, which I had escaped. I didn't know it yet, but at that very moment our life was just dyed purple.

This is the incipit of a book I will never write. I don't have the guts, probably not even the skills. After that unexpected entrance, silent but at the same time so shocking, the violet is the color that accompanies us. Since that day, every day.

It was July 14 of 2013 and Leonardo would be 3 years later. We were on vacation. After that first episode (of which I later learned the name, absence-type epileptic seizures) there was another one, that same day. We were not in Italy and when we went to the nearest hospital they told us, after doing to Leonardo an electroencephalogram and some exams, that there was no reason to worry. The next day we left the hospital with a promise to meet again after a few days to show the exams and the electroencephalogram to a neurologist. In the hospital, actually, we didn't go back. Two days later, Leonardo had a seizure and we decided to return home immediately. It took only one EEG — done correctly, not like what had been done in the first hospital — to get the diagnosis: focal epilepsy.

In the following months Leonardo changed his medications several times. But no one was able to really block the crises. The crises changed: sometimes shorter, sometimes longer, more or less frequent, but they did not seem to want to stop. In October, while we were in the hospital to undergo a second resonance, Leonardo suddenly began to have incoming crises. The doctors decided to put him in a pharmacological coma. In the following days the epileptic activity did not seem to stop, despite various attempts and changes of medications. After several days the Niguarda was contacted. Or rather the Centro Claudio Munari who deals with surgery for epilepsy. And finally a good news came: Leonardo was a good candidate for the operation. Now it was all about organizing the transfer.

The wait was not easy, because it was not immediate. It served more than a few days because there were no beds available in Neurorianimazone and that was a prerequisite for the transfer. At last the long awaited news came: Leonardo would have been transferred the next day. Two days after the arrival at Niguarda Leo was subjected to surgery to remove the epileptogenic area. It was on November 14th of 2013 and at that intervention we owe the life of Leonardo. The awakening from the pharmacological coma was not simple or fast and when Leonardo woke up there was another unexpected news: Leonardo was not moving or talking. The first step towards a return to normality there was when finally, days later, we moved to Pediatrics. And a second, fundamental step was the return home. Leonardo started again slowly to speak and we started the physiotherapy for the recovery from the intervention. It was there that we discovered that something had perhaps gone wrong during the long stay in resuscitation: Leonardo had problems of walking that he had never had before, and had them to both legs. Something not easily explable, since the surgery had covered a brain area that is responsible for controlling the movements of the left side only.

A few months later the epileptic seizures returned. In 2015 Leonardo was subjected to a second intervention, this time for the implantation of intracerebral electrodes that allow to perform electroencephalograms of absolute precision. The hope of all was that the further epileptogenic area would be further operable without causing irreparable damage. Unfortunately, the second area was identified but was very close to the first time: a further operation would have resulted in paralysis of the left leg and arm. We decided not to go further.

Even today the crises accompany the days of Leonardo. Or better, I should say every night because they always appear during the rest and sometimes make their appearance even during the day. The changes in drugs have only been able to improve the situation in part. In all this, one thing we are sure: the surgery saved his life. Leave it as a last option, only after trying all the other roads, maybe getting there in desperate conditions — as happened to Leonardo — we think it's not the best route. This is why we decided to contribute, in our little one, beginning to talk about surgery for epilepsy wherever there was a chance. We think that therapeutic choices should be all right now. We do not think it is acceptable that people, and especially children, should wait so long to have access to therapeutic options that could change their lives.

Maurizio

NdR: The history of Leonardo is not related to a diagnosis of stroke but suffers from focal epilepsy due to congenital cortical dysplasia. We decided to publish it equally to share its testimony with all those families of young ictates who also live the condition of epilepsy as a result of the lesion suffered.