The World Down’s Syndrome Day was celebrated on 21 March. We did not want to let this date go by without making a reference to it and, for this reason, we publish this text about the disease by Dr Miguel Palha.
My heart opens to your voice
Right after finding out that the baby has a serious illness, especially Down’s syndrome, the parents experience a feeling of deep sadness, anguish and suffering. Long before the pregnancy started, together, the parents imagined a healthy, beautiful and perfect baby. The news that the baby will, probably, have an intellectual development disturbance, in addition to evident and unmistakable physical stigmas, generally causes deep unhappiness. It is an extremely difficult period.
But slowly, progressively, the parents discover that the baby is, after all, like the others. They start to find the baby cute. They begin to find physical similarities with a family member. They notice that the grandmother starts to like the baby very much and that she comes up with a thousand and one reasons to hold him. They recognize that friends play with the baby without out of obligation or pity. They marvel at the eye exchanges during the baby's rare alert periods. And, all the time, they take pictures and make videos. Then, the parents ask the inevitable question to the paediatrician: "- The baby is a good case, isn't it Dr?" The magic happened. Parents now begin a slow process of acceptance and begin to feel better about the baby. Like the parents of other children, they excitedly tell people the latest baby achievements, and scrupulously make notes about the latest development gains.
They realize that they are no longer the parents of a disabled child and that the baby, first of all, has a name and answers by the name of MANUEL or MARIA. They understand that the baby is a person with a life of its own, with affections, emotions, and that the physical stigmas of the disease correspond only to appearances or merely superficial aspects. They recognise that, in addition to or behind physical appearances, illness, vulnerability or disadvantage, there is a person, like any other, who, in naturally peculiar ways, knows how to laugh, how to cry, how to understand, how to suffer, how to think and how to love.
For outsiders, the immeasurable, indescribable, affective flow between parents and their children with Down’s syndrome (and, very appropriately, unconditional love) is incomprehensible, therefore unjustified. But the truth is that despite being an apparent irrationality, these parents discover early on that the baby has an identity and acknowledge, without hesitation, that they love MANUEL or MARIA to bits and that they like him or her so much as their other children.
Miguel Palha
Neurodevelopment Paediatrician
Paediatrician at the CHLN Paediatrics Department (on unpaid leave)
Founder of the Portuguese Association of People with Trisomy 21 (APPT21)
Clinical Director of the Child Development Centre DIFFERENCES (autonomous unit of the APPT21)
