How To Deal With The Fact That Our Child Will Be Born With Functional Diversity

The term functional diversity is intended to offer a new terminology that is more respectful of the disability or handicap dimension. A social reality as sensitive as it is complex that many families must face when, during pregnancy, they receive the diagnosis that their baby suffers from a specific problem.

Realities such as Down syndrome, spina bifida, cerebral palsy or any other type of physical or intellectual disability determine this broad spectrum, which in turn, it opens personal struggles so worthy, courageous and sacrificed that millions of fathers and mothers carry out at this time.

However, in “You are Mom” we want to delve into another aspect. We want to tell you about that key moment in which this news is received. When in those prenatal tests that every mother usually undergoes, she is informed that the fetus, her baby, has a certain problem. That your child will come into the world being special and needing much more from his parents, from his mothers.

Functional diversity, something no family expects

We could safely say that when we finally discover that we are going to be mothers or fathers, it is not within our expectations to have a child with some kind of problem. Of course, we dream of healthy, strong boys and girls capable of opening up to the world little by little with autonomy.

However, as he explains According to a report by the World Health Organization (WHO), in the world there are about one billion people with functional diversity. Of them, a good percentage have a genetic origin. That is, their disability is not associated with accidents, illnesses or neonatal complications, such as being born prematurely, infections … etc.

Let’s see below how these realities are experienced.

Diagnostic tests to consider

During pregnancy, it is common for us to undergo various prenatal tests to detect any problems that the fetus may present.

We all know the classic test of amniocentesis, something that mothers choose or not to carry out. Sometimes, the possible fear of a side effect of the test itself or simply not wanting to know if your child has some kind of problem, makes it not an option followed by all families.

However, throughout the second trimester and through various blood tests, Down syndrome, spina bifida, and other genetic problems can be detected early through these parameters:

• Alpha-fetoprotein (AFP)
• Unconjugated Estriol (uEST)
• Human chorionic gonadotropin (hCG)

Likewise, and through routine ultrasound tests, various alterations or problems that give clues to a possible functional diversity can also be observed.

How to deal with the news of a functional diversity

It may seem striking and even disconcerting, but the news that our baby, that creature within us suffers from a certain problem, is lived as a mourning. It is curious because the word “mourning” implies loss, and in this situation we have not yet “received” that new being.

The news that our baby suffers from some type of functional diversity is experienced as a mourning because we make a psychic and emotional resignation. We have to assume that our child is not as “we had dreamed”.

It certainly sounds harsh, but it is a reality. Both the mother and the father go through the same phases as a grief:

• Denial : usually looking for more opinions, new evidence, other opinions.

• Anger phase : we feel confused and even angry “why did he have to touch me? I have taken care of myself, if I don’t have a genetic background! “

• Acceptance stage: little by little you end up assuming reality. It is an integrative phase where the emotional part and expectations are adjusted. It is the moment in which we must inform ourselves about what strategies we will have to prepare to offer an adequate quality of life to that child who is about to arrive.

It should also be noted that in very serious cases, in those situations in which the baby can arrive with very complex malformations, there is the possibility of an abortion. At present, we have the case of the Zika virus and those risk pregnancies where the fetus develops microcephaly.

In these cases, the choice to come to term with that baby is something that only involves the family. It is a hard and personal choice that every mom and dad will value having all the information, all the options and possible help from medical institutions.

What should I do when they tell me that my baby will arrive with functional diversity

When we receive the diagnosis, we have to assume that we will go through the phases mentioned above. Do not be ashamed for feeling angry, for feeling disappointed, for being angry. It is a normal process that little ends up culminating in acceptance.

• Lean on your partner, your family and friends.

• Assume that from now on, your life will be closely linked to health professionals. Get advice on the functional diversity that your child suffers from, look for information, go to family associations and start handling data, social assistance …

• Although your child is not going to be what you expected, in reality, he can be much more than you think. 

• When your baby arrives in the world, become aware that we are going to have to fight for an essential aspect. We do not want equality, we want the total INCLUSION of that child in society. We will start a battle so that you have the same rights and opportunities when it comes to integrating, taking into account your particularities.

Functional diversity is not a defect, it is not a problem. It is above all a daily struggle for a being that we love above all else. Believe it or not, you are going to develop with that child a type of exceptional affection that will force you to always give your best.

And remember, you will never be alone. The look of your child and their smiles will be your daily engine, do not hesitate.