Child in coma after eating cheese, father: “He has epileptic seizures and feeds himself through the tube”
The story of an eleven-year-old boy who, when he was 4, was a victim of raw milk cheese and is now in a neurovegetative state has gone around the world for haemolytic uremic syndrome (HUS).
Now the speaker is speaking padre of the little one, Giovanni Battista Maestri, in an interview given to Gambero Rosso. “Today he is 11 and doesn’t recognize us. His sister begs us to help him heal. But it’s impossible. I can only inform and tell everyone that that product is poison for children.”
Hemolytic-Uremic Syndrome is a bacterial infection that puts the functionality of various organs, in particular the kidneys, at risk. It is a rare disease, how did your son get infected?
“It was the fault of a raw milk cheese, i.e. produced with unpasteurized milk. The milk was infected with strains of Escherichia coli bacteria producing a powerful toxin called Shiga toxin. Raw milk kills children. Don’t give it to your children. The my child has been in a permanent vegetative state since he was 4 years old. A torture that has lasted for seven years.”
Was it a particular cheese?
“I purchased a piece of “Due Laghi” cheese, it was advertised as “ideal for children’s snacks” I didn’t know it was made with raw milk. Even knowing this, I wouldn’t have had a problem with it. I didn’t know how dangerous raw milk products were for children. I was the one who fed it to my son. Two days later the child started experiencing stomach cramps. So we took him to the emergency room in Trento and there he went into a coma. He suspects hemolytic-uremic syndrome. So we urgently transferred him to Padua and admitted him to intensive care, where the diagnosis was confirmed. Months have passed. At this point none of us had yet made the connection to cheese.”
What was the next step?
“We had to move to Conegliano Veneto, to admit the child to a rehabilitation centre. At that time, my wife and I still had the hope that our son would recover. Then, as time passed, I realized that instead that place was the place where they would teach us parents to manage our new reality. They rehabilitated us, not him. We stayed in Conegliano for a year, moving our entire life there to be with our son. During this time, I remember that it was December 8th, an article was reported to me that described the events that occurred in my village, and I understood that the child “in very serious health conditions due to raw milk cheese” was my son” .
When did you decide to bring him home?
“In August 2018 we returned home. We were offered to leave him in a permanent hospice facility. But we preferred to take him back to his space, to his bedroom. Our son is looked after by my wife, who quit her job to look after him in every way. My 4 year old had a whole life ahead of him, he had a future. Which is now lost. He recently turned eleven and has been in a neuro-vegetative state for seven. She is very tough. My wife has a strength that falters in me sometimes.”
How is your child’s day today?
“My baby is artificially fed with Percutaneous Endoscopic Gastrostomy, a procedure that connects the stomach and the outside via a cannula that passes through the gastric and abdominal walls. This way we give him the food and nutrients he needs. He came out of the coma but doesn’t recognize us. The disability is total. He doesn’t speak. He has thirty seizures a day. Believe me, it’s an indescribable thing to see his suffering and not be able to do anything.”
Your family shows enormous courage. How do you find the strength to carry on?
“We have a younger child. She knows what it means to hear, ‘Dad, get my brother well?’ A stab in the heart. I will never be able to get him well. I fight to make the matter known, and the anger is infinite, a pain that clouds the mind. The biggest disappointment is that with everything I do, I still haven’t been able to stop things like this from happening to other children.”
What do you feel like telling parents of children who are struggling with HUS?
“I ask those who find themselves in the same situation as us, with children suffering from HUS, to help me spread the dangers of raw milk products. Let’s carry out information, awareness campaigns, let’s tell everyone: on the playground, in the markets, at the nursery school. Let’s involve paediatricians. Raw milk products, I will never tire of saying it, are poison for children.”