Child with haemophilia: a challenge for new parents

By Stavroula Sanida, M.Sc., Psychologist – Psychotherapist, Certified FAP Trainer by the University of Washington

Announcing a chronic illness comes to the family with many emotions. When parents are informed that their child is suffering from haemophilia, they are faced with a big amount of information. Initially they need to be informed and know how to act in case something occurs.

There are many questions on their part. Their feelings and thoughts come to add on what concerns them. “What if the child falls and hit themselves?”, “And if the bleeding doesn’t stop?”, “If they find themselves alone and get panicked?” In addition, so many more questions start ringing in their minds. The growing uncertainty is an additional burden for parents, since they are initially unaware of what they will face. Possible negative scenarios are likely to flood their thoughts: “Will I be able to help the child if something happens?”, “And if they get into a fight and get hurt?”.

In the early stages of diagnosis and information, fear and agonizing questions seem to dominate. Parents are urged to live with their child’s illness by displaying calmness and acting as helpers in case of need. As time goes by, they may feel guilty as well as thinking: “I’m to blame that they inherited this disease”. Or to be distressed that their child will have to learn to live with some restrictions. Or even get angry because it’s unfair for this to be happening to their family.

Parents must show respect for every emotion and thought that emerges within them. It is worth expressing what concerns them both with each other and with the treating physicians. The chronicity of the disease is directly linked to numerous mental processes in all family members. Over the years, these processes can change hue. It is important, above all, that parents listen to themselves and seek help whenever they feel it is necessary. In this way, they develop the ability to listen to their child’s thoughts and emotions, as well as those of their other children, respectively.

It is not just about getting family members to accept what is happening. They need to see the disease as an opportunity for interaction, collaboration and empathy. The ultimate goal is to build skills of reciprocity, support, redefinition of their values and awareness of each member’s needs. The proper way communication, acceptance of the situation, recognition of emotions and re-significations will push the family to become more psychologically flexible and durable.