A march was organized this Saturday in support of the parents of Marwa, a brain-injured baby whose fate opposes the family to the hospital of Timone.
They were between 200 and 300 to have gathered on Saturday March 4 in Marseille. Their message? “Jamais sans Marwa” in support of the parents of this severely disabled 16 month old baby. The people, many of whom wore baby t-shirts, paraded with the girl’s parents and twin sister, behind a small “Let My Twin Sister Live” banner.
“We know she will have a severe handicap. We accept her disability, she has the right to live because when I look in her eyes, she shows us that she is there, she clings to it, ”said Mohamed Bouchenafa, Marwa’s dad, during the presentation. ‘a press conference organized a few hours before this march.
An “unreasonable obstinacy”
Marwa was admitted to the Timone hospital on September 25, 2016 for a devastating virus. On November 4, the medical team decided to stop the therapeutic treatment and to disconnect the respiratory system keeping the child alive. The parents opposed it and went to court. The little girl “is conscious but suffering from a major and irreversible motor deficit”, then judged the doctors in a report submitted to the administrative court. They also confirmed “severe and definitive neurological damage”.
On February 8, the Marseille administrative court ordered the AP-HM to continue treatment for Marwa, as requested by her parents. However, for the doctors of the Timone in Marseilles, it is about an “unreasonable obstinacy”. This is why the AP-HM seized the Council of State to rule on the fate of the baby.
The meeting was held on Thursday March 2 behind closed doors, said the State Council, which indicates that this decision was taken at the request of the parents of the child and of the hospital. The hearing took place before a summary judge, which allows for an emergency procedure.
Tensions between families and medical teams in a quarter of cases
“It went well at the Council of State, hoping that they make the right decision for Marwa because we are tired here. Instead of staying with our daughter, we run to the courts in Marseille, in Paris, it’s too much for us. I hope this is the last … I hope … ”added Mohamed Bouchenafa. The Council of State is expected to render its decision within the week.
These differences between families and medical teams are “not uncommon. It is fairly regular but it does not represent the majority of cases. The announcement of bad news to families strains relations in about a quarter of the situations ”, explained to Why actor Prof. Marcel-Louis Viallard, head of the mobile support and palliative care team, at Necker Hospital.
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