The guidelines for intensive care look different around the world, but Sweden stands out. Here, premature babies are saved as early as week 22. In addition, there is an ongoing discussion about the participation of the parents when decisions are to be made: Who gets to decide?
Since Jasmin’s son Theo was born almost six years ago, he has needed monitoring every night and oxygen when necessary. Children born extremely prematurely are at risk of problems that last their whole life.
– Early in life, it is diseases that affect the lungs. Then they suffer from diagnoses linked to the brain. Brain hemorrhages. And 40 percent need treatment to prevent the retina from detaching and the children from going blind, says Ann Hellström, senior physician and professor of pediatric ophthalmology at Sahlgrenska University Hospital.
“Very big responsibility”
Just as the question of when intensive care should be used divides hospitals, it involves parents to a completely different degree. A hospital is open with the parents basically having nothing to say.
– I think that it is putting a very big responsibility on a person who is quite unprepared for that kind of big decision to decide about life and death, says chief physician Erik Normann, acting director of operations at the Academic Children’s Hospital in Uppsala.
Joint decision with the parents
In Uppsala, it is the “child’s interest and rights” that weigh the most, while at Karolinska University Hospital – just a couple of miles away – what the parents want is weighed.
– We don’t want the decision to rest with the parents, but for us to arrive at something together. You can call it “shared decision”. But we don’t make the decision without having the parents on board, says Louise Endre Tovi, pediatrician and neonatologist at Karolinska University Hospital.
Jasmin got the question, Helene didn’t. Hear them talk about their experiences in the player above.