Hemophilia treatment. Immune tolerance: the parent's perspective

A parent whose child affected by hemophilia develops an inhibitor has to cope with strong emotions and anxieties related to the acceptance of this second diagnosis when just having severe hemophilia seems nothing compared to having antibodies that neutralize factor infusions and the possibility of uncontrolled hemorrhages. During the initial stage of adaptation to this frightening reality, a parent needs constant support by the Center staff. The period during which medical personnel and parents decide about the possibility of putting a child on an immune tolerance protocol is a crucial one; if parents feel they have been well informed about this sort of treatment and feel adequately prepared to handle situations which may arise, they will take an active role in the care of their sons and maintain a positive attitude. The fears and worries are many, the greatest of which is the constant dread of a negative outcome. The commitment of staff during the formal period of instruction, the use of a local anesthetic, play therapy and the very young age of the child were variables that made peripheral, home infusion in a 1 1/2 old on immune tolerance possible. The needs of siblings, of the parents themselves and the strong bonding between mother and child are only but a few of the psychological aspects related to immune tolerance.