Sat. Oct 1st, 2022
When your baby is born with Down syndrome: how to deal with the diagnosis

Today, March 21, is World Down Syndrome Day , a condition (not a disease) that occurs in 10 of every 10,000 births .

For this reason, we dedicate a post to talk about the fact of bringing a child with this syndrome into the world, with the aim of making it visible and shedding a little light on the families that travel this path.

Today, March 21, is World Down Syndrome Day , a condition (not a disease) that occurs in 10 of every 10,000 births .

For this reason, we dedicate a post to talk about the fact of bringing a child with this syndrome into the world, with the aim of making it visible and shedding a little light on the families that travel this path.

Down syndrome: what is it?

Down syndrome is the leading cause of intellectual disability and the most common human genetic disorder. In most cases (95% of them), Down syndrome occurs because there is an extra copy of chromosome 21 , which is known as trisomy 21.

The effect that the presence of this alteration produces in each person is very variable; people with Down syndrome show some common characteristics but each individual is unique, with a unique appearance, personality and abilities.

Babies with Down syndrome will have many physical traits that run in their family, in addition to those characteristic of people with Down syndrome and some degree of intellectual disability .

But it is important that we know that their personality, hobbies, dreams and projects will be what truly define them as people, and that their disability will be just one more characteristic of their person.

How to deal with the diagnosis of Down Syndrome

Without further delay, we give you some recommendations that can help you face the diagnosis of Down Syndrome in a child, from a psychological point of view.

They can help you especially in the initial moments, especially not to feel alone on this path:

The initial disorientation and the first emotions

It is normal to feel disoriented when we receive the diagnosis of Down Syndrome.

We can also be in a state of shock , not believing what we have just been told, thinking about possible causes and even feeling guilty about something that was done or not done, and a rejection of oneself for the way in which it is assumed . the news.

That is why you must begin to practice self-compassion and acceptance of all these emotions, but without forcing yourself.

embrace your emotions

Beyond the initial shock , at the news that our son is born with Down Syndrome, it is normal for mixed feelings to arise within us.

Feelings can range from sadness to uncertainty, guilt , anger, frustration, to joy and acceptance, and are part of a duel (which we will learn about in the next point).

Allow yourself to feel all these feelings and do not repress them, accept them and give them their space, since they have their reason for being. Don’t judge yourself for feeling them, validate them; they are part of you and it is a completely normal reaction to such a complex situation.

And it is not better or more correct to feel one way or another. In addition, beginning to validate those emotions will allow you to accept them and, as a consequence, to accept the new situation.

We are talking about a duel: ask for help if you need it

Grief is the natural emotional reaction that is triggered when we suffer a loss, and this loss can be of any kind; therefore, it also includes the “loss” of the expectations of having a child without any disability.

So we must begin the process of elaborating the duel that entails facing this totally new situation for us.

Sometimes to cope with this duel, which culminates with the acceptance of the new reality, we will need psychological help , and sometimes not. Whatever your option is, it’s fine, but above all, ask for help if you feel you need it; You don’t have to go through this alone.

release these emotions

It is not only important to accept these emotions that we feel, but also that we can release them.

Find your way to do it ; crying, writing, distracting yourself, going for a walk, sharing these emotions with other people… Find your way of liberation and don’t repress anything.

Your child is much more than a diagnosis

It’s also important not to dwell on the diagnosis or “label” of Down syndrome, as your child is so much more than that.

Although it is true that a diagnosis allows us to understand and identify what our child needs, in addition to a certain feeling of “relief” knowing that what our child has has a name , has been studied and is not the only one in the world, also It is true that this diagnosis can generate a lot of fear and uncertainty.

It is normal; for this reason we encourage you to go a little further, since your child is many things before and after this “label”, your child may be nice, happy, perfectionist or a thousand other things, and we must understand that label as a point of exit to understand, not as a place to “stay” or lament.

And in relation to this, we collect the testimony of Amber , mother of a child with Down Syndrome:

“For us, Amadeus is just another baby: she needs milk, she cries when she’s wet or uncomfortable and she smiles when she sees us. Together with her we are learning many things. She is our daughter and we are her family. For us she is perfect, and we don’t see a diagnosis or a label. “

Find resources and partnerships

Finally, it is advisable that, despite the sense of urgency once the diagnosis is received, you take the time necessary to digest the news , inform yourself and assess the options available to you.

The information reassures and, on the other hand, sharing what happens to us with other people who are going through the same thing can also help us.

For this reason, it may be helpful for you to look for true and official information about Down Syndrome, in reference manuals and on official internet pages, where you will also find families who are going through the same thing. Some of the associations and pages that can help you are:

  • Down España
  • Down Madrid
  • Down Catalonia
  • Catalan Down Syndrome Foundation

Search in your autonomous community, province or city, if there are associations of families with children with Down Syndrome; You will see how you begin to feel understood and cared for. And it is that this process is complex, you deserve to go through it accompanied!

Final reflection: a life that can be wonderful

If you have received the news that your child has Down Syndrome, it is normal for this to generate mixed feelings. It is important that you listen to yourself and that you respect your rhythms.

But above all, be clear that these emotions will also change, and that you will find the best way to deal with the situation . Sometimes with psychological and/or medical help, others with help from family , friends, people who are going through the same thing… Find your own resources and above all, let yourself be helped.

Although your child was born with this condition, it does not mean that they cannot learn and grow, as well as have a full and full of experiences, enriching and happy life . Of course he can! Perhaps with other types of supports, but he will have it. He is your son and he will be wonderful .