This is story of a void, the time it takes to fill it, little by little, with a word or a detail, an identity swallowed by grief and solitude. This is the modest and careful account; smug considerations would be uncalled for. This is the story of a little boy, of his memory, of the power of a space that binds a mother and her son.
text © Virginie PLAUCHUT - translate by Sophie KNITTEL
“Gianluigi was born on May 10th, 2006. He was a small baby weighing 5.5lbs. He was, like a lot of infants, jaundiced. He was transferred in a larger hospital’s neo-natal ward, only to be told that his stomach is swollen because he does not tolerate the milk he is given. After two weeks, my baby comes home, drinks his bottles very slowly and regurgitates a lot. He starts to lose weight. When he gets below his birth weight he is hospitalised in the paediatric unit. And the nightmare begins. Gianluigi stops breathing repeatedly, his rate decelerates. He is transferred in the paediatric intense care unit. He is often very blue, barely feeds, and has difficulty to swallow… The sentence falls: tracheomalacia (the trachea’s cartilage did not develop so when he swalows and breathes, the trachea walls collapse). He gets a nasal catheter inserted. He is back from hospital in June, and on September 21st the doctor decide to operate and give him a gastrotomy (a gastric catheter in the stomach to feed him) and to do a Nissen fundoplication (surgery against reflux). We are being trained to learn how to use the monitor when he is in distress when breathing, we are shown what to do to reanimate him, and how to manipulate the feeding tube and the nourishments. At the end of October, we let back home with Luigi. Gianluigi didn’t stop going back and forth between home ans hospital, he was fragile. He was behind in motor skills development. Genetic analysis, blood tests, medical exams, respiratory distress, but Gianluigi keeps smiling.
From the age of 3, his health improves a bit. I became a nurse. I wanted to offer my son something other than a life in hospital. At 3 ½ years old, the sentence falls: cardio-facial-cutaneous syndrome.
Years pass, Gianluigi is fed by tube, can sit up, dances in the sitting position, makes little screams, always has his fingers in his mouth, and keeps smiling. In September, I find a type 4 school for my son and he goes to his father’s every second weekend.
11 March. Gianluigi spends the weekend at his father’s, where he goes into respiratory distress that provokes a cardiac arrest.
1:06am, his father phones me: “Chris, the little one is dead”.
It had to be clear, precise, I had to understand straight away. When I eventually arrived at his papa’s home, he was doing a heart massage while waiting for medical help.
19 minutes and 32 seconds, that’s the time it took the firemen to arrive!
My baby was there, all blue in the face, but peaceful. I knew it was over.
The firemen manage to kick start his heart with massive doses of adrenaline. They take him to the closest hospital. On the way, I contact the hospital that follows Gianluigi, explaining the situation, to ask for a transfer. Once at the hopsital, Giankuigi is stabilised.
5:00am, the hopsital tea in charge of Gianluigi arrive to transfer him. Upon leaving, the paediatrician tells us he is in a very critical state and doubts he will come out of it. I reply “if my son decides to go, let him go, don’t prolong, he doesn’t deserve to be a vegetable”. In this unit, where Gianluigi has come so often, he is settled in a room, he is there lying on his small bed. The whole family comes to kiss him one last time. The paediatrician makes everybody leave the room.
Gigi is placed in his father’s arms. The in mine, and then I suddenly felt his entire body let go, I looked at his father and told him “it’s over, he’s gone”.
I went back home to pick up some clothes for my son. His father stayed near him. I came back, we dressed our child, the nurse took prints of his litlle hand, cut one lock of his hair, and the whole team came to kiss him.
We took him down to the morgue at around 8:30am. We stayed there with our son. Until the arrival of the funeral home and the small white coffin. We placed him in it, kissed him one last time. And then we placed his cuddly toys, his keys, a photo of the three of us, a white rose on each side, the cuddly toy of one of his friends who had gone before him, my earings clipped to his shirt, his father’s ring, a lock of my hair, and we were asked to leave to close th coffin. That’s it, it’s over. We will never see our baby again.”