He knows Ondine syndrome, a strange genetic condition that paralyzes children’s breathing if they sleep soundly.
Some parents would believe that the most dangerous thing that can happen to our children while they sleep is nightmares. Unfortunately, this is not the case: there are cases of children suffering from Ondine syndrome, a strange genetic condition that paralyzes breathing during deep sleep and could lead to death.
Ondine syndrome is the mutation of a gene that cancels the body’s automatic reactions, including respiration. During deep sleep, it can lead to congenital central hypoventilation. Children may stop breathing or stop the exchange of oxygen in the blood, with fatal consequences.
Children with Ondine syndrome cannot have normal sleep. For the night, they have to stay connected to ventilation devices that send oxygen directly to the windpipe.
Other problems caused by this syndrome are that automatic actions on body organs, such as heart rhythm or bowel function, are suspended.
This condition has been studied very little and is not very frequent. There are approximately 1,200 children in the world who have survived this syndrome during the first months of birth.
Care for children with Ondine syndrome
Not in all cases, children’s brains require increased insulin production, so even the rest of their lives must be injected.
Patients undergo a tracheostomy, especially in the first months of life. In this intervention, they adapt a plastic tube that allows them to be connected to artificial respirators. It also allows them to breathe easier and it is easier to remove mucus in an emergency.
Tracheostomy is an open wound, so the risk of infection is very high and hygiene is of utmost importance to avoid complications. Even a cough or flu could be really dangerous.
Being a little known problem, treatments are scarce and expensive. Currently, there is an association called Ondine Mx Syndrome to publicize this condition, with the aim of deepening its study to find a possible cure.