Today we celebrate World Down Syndrome Day, and if yesterday we echoed the emotional campaign, # Authentic, launched by Down Spain to raise awareness in society about how people with Down syndrome live, today we collect a interview with Agustín Matía, manager of Down Spain.
A few weeks ago I was surprised to read this news about the numbers of children with Down syndrome who are voluntarily aborted in our country. Agustín says that two of the reasons behind this decision are fear and ignorance of what it means to have a child with Down syndrome. We leave you the interview and your thoughts on it.
Why are the births of babies Down syndrome in Spain decreasing?
"There is no birth record of people with Down syndrome in Spain, that is why the available information are estimates commissioned by DOWN SPAIN according to the existing statistical and registry sources ".
"We estimate that in recent years the number of births of babies with Down syndrome is around 240 people, although in decline. "
What percentage of women end pregnancy after diagnosis?
"We know that currently the number of births of people with Down syndrome is one third compared to the number of births when there was no abortion legislation in Spain (in the early 80s)".
Current clinical procedures allow to be able to glimpse Down syndrome very early, from screening tests that allow an increasingly reliable estimate (triple screening, non-invasive prenatal tests) to the diagnosis of definitive confirmation after amniocentesis ".
"Clinical experience indicates that in those cases in which it is confirmed that the baby has Down syndrome, the abortion decision is usually around 100%""Many of the current births of babies with Down syndrome are from couples who accept the possibility of that birth without needing to reach a confirmation diagnosis with amniocentesis; that is, the diagnosis is confirmed at birth ".
The decision to end pregnancy
"Little can currently be done to change this situation while the majority social consensus is based on the misconception of having a perfect child, without defects or limitations".
"However, it is possible improve information protocols and first news, providing neutral, truthful, adjusted and balanced information, avoiding eugenic biases and generating more security in families to make their decisions based on knowledge and not on fears or prejudices "
"Prejudices towards disability, fears about what seems to be more complicated and imperfect lives, and to a large extent, the ideal belief that it is possible to control the perfect birth of future children, are the most decisive elements before the decision to end the pregnancy of a child with a disability. "
What fears do parents experience when diagnosing this disability in their baby?
"Before a diagnosis of Down syndrome, the main fears that families usually refer to are related to difficulties involved in raising a child with a disability, the limitations you will face in life and your role as fathers and mothers "
"But one of the parents' most common mistakes is to start designing and mentally planning the whole life path of the child with Down syndrome, instead of letting life take its course, just like it is with children without disability. "What advice would you give to a couple who just had a baby with Down syndrome?
"I would mainly tell you that focus on the present, the here and now. That they look at their son for what he is: his baby, and that they dispense with the disability backpack as something inevitable but not essential ".
"It is important that they understand that their child is different from what they expected, and that this will give them a different life, although it does not have to be a limited or reduced life. On the other hand, if they wish they can also seek help and support, there are many people and families who have gone through the same chain of emotions, feelings and circumstances "
"But above all I would tell them to enjoy the birth of their son: a little miracle to live"The work of Down Spain
In Down Spain they offer support to people with Down syndrome from birth and throughout their lives, fighting for its full social inclusion. They work, among many other areas, early care and health, education, the promotion of their autonomy or the struggle for their rights.
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Acknowledgments Agustín Matía Down Spain Manager
In Babies and More Down Syndrome
