« A 11 ans, Rémi est conscient qu’il attend un donneur pour avoir un nouveau cœur », raconte son médecin
It has been ten months since Rémi, an 11-year-old from Toulouse, was transferred to the Bordeaux University Hospital with a view to a heart transplant. Among the six children followed by the Bordeaux University Hospital for a heart transplant, Rémi is the only one hospitalized since he was fitted with an artificial heart which requires constant monitoring and a lot of care. Doctor Nadir Tafer, head of the anesthesia and resuscitation unit for pediatric and adult congenital heart disease at the Haut Lévêque hospital of the Bordeaux University Hospital, answers questions from 20 minutes on his situation and the problem of the deficit of pediatric grafts.
How is Remi today?
Rémi’s morality has its ups and downs. We try to liven up his stay, as much as possible and in connection with his parents, with mini-projects and small outings. Going out with an artificial heart like that, no one has. We make sure that this is possible because a child is not made to stay in a hospital room with the anguish of dying at any moment. He is aware that he is waiting for a donor to have a graft and finally goes home.
Does he still face a long wait?
Yes. Ten months is already a long time. We are starting to experience record levels of expectation. On the pediatric heart transplant waiting list, the average delay is around six months. And 80% of children are transplanted at one year. With an artificial heart, we begin to be in relatively long durations. Artificial hearts that have lasted more than a year are rare.
Is waiting with an artificial heart a fairly rare situation in children?
In France, only 10% of children awaiting a heart transplant have an artificial heart. We fit one to two artificial hearts per year in our center and around ten in France. Not all children who are waiting for a heart transplant are on an artificial heart, it depends on the degree of insufficiency. Some are waiting at home taking medication, that’s the best case scenario. Waiting under an artificial heart is painful because it carries the risk of complications and hospitalization, sometimes far from home.
Is there a problem of morphological compatibility for pediatric heart transplants?
It is for the small jigs that it is the most complicated. When you are a teenager, you have an adult size and with a weight of 40 to 50 kg, you can receive a graft from a young adult. Each year, about thirty transplants are performed on children. According to figures from the biomedicine agency, almost one in five dies on the transplant waiting list. Among them, two-thirds are under six years old.
How can this deficit of pediatric grafts be explained?
The whole difficulty is to bring up this very sensitive subject with parents who are going through the tragic and traumatic ordeal of the loss of children. To be removed from one’s organs, overall, and to simplify, one must have the heart which has not stopped but be in a state of brain death. In an adult, it is already a test. This often refers to a brutal accident. When the same situation occurs with a child, the question becomes much more complicated and very sensitive, so much so that sometimes it is not even mentioned. Moreover, from experience, the donations of modified pediatric organs of spontaneous steps of parents, already warned. Hence the importance of raising awareness upstream to increase the possibilities of organ donation.
What are the chances for Rémi to return to a normal life if a transplant is finally proposed?
We are used to this type of operation and the machine is well oiled. Transplantation involves risks but in Bordeaux, for ten years, on 100% survival on our pediatric heart transplants. We lost none of them, they all went home. Rémi will have to recover from his ten months of immobilization and hospitalization, but with a new heart that works, he will have the possibility of recovering all his faculties and returning to a more or less normal life.