What can you do if you are going to have a child with Spina Bifida?

What can you do if you are going to have a child with Spina Bifida?

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When a father or mother hears a diagnosis of Spina Bifida, the first thing that usually comes to mind is: Why did it touch us? Why our baby? Some studies show that there are many factors that contribute to the development of Spina Bifida and / or Hydrocephalus. For this reason, it is very important to understand that parents are not to blame, that it was not some lack of care or an accident that caused your baby's disability, since the Spina bifida it can happen in any situation.

At first, no more knowing the news, it is normal for parents to feel desperate, impatient and lost. You will need time to adapt to the new situation, and above all accept it. Now, during gestation, when the baby is in the womb (the safest place) it is time for you to seek information and advice, and make the necessary decisions.

Although medical advice is very important, you must seek other points of view on the subject: the Spina Bifida Associations in your city or province can offer you practical solutions and guidance. In addition, contact with other parents who are experiencing the same situation, can give you more security and support.

These moments may be one of the most difficult of your lives. That is why it is important that you share your feelings with friends and family. If you have trouble talking about the subject, the solution is in the professionals. But, the most important thing is that you accept all the help that comes to you, especially among yourselves.

For this reason, you should go to the doctor together, to hear the characteristics of your child's disability. The information can be alarming and they will surely have to repeat it several times until you understand it. It is better that you go to several specialists in Spina bifida, since the techniques advance very quickly.

Some doctors are convinced that people with Spina Bifida and Hydrocephalus have such a poor quality of life that they recommend termination of pregnancy. This is a pretty extreme "medical" position that rules out other views. It is true that there are many medical problems related to Spina Bifida and Hydrocephalus, but quality of life is not simply a medical criterion. The most qualified people to make judgments about this are those with Spina Bifida and Hydrocephalus and they are convinced that life is worth living.

Knowing what are the phases that the family go through from the moment they know they are going to have a baby with Spina Bifida, can help the father or mother of a newborn with this problem, to accept and face the new situation.

Impact phase: the diagnosis. In this phase, parents must be helped to mitigate guilt and build self-confidence.

Repercussion phase: the process of normalization of family life can lead to acceptance of disability, resignation or rejection.

Assimilation and reorganization phase: once the child's disability is assumed, the feelings are tempered and balance returns to the family.

Acceptance attitude: You have to accept the child not only with their limitations but with all their possibilities and abilities.

The attitudes that parents may adopt regarding the treatment and care of their child with Spina Bifida may be different, and in some cases erroneous. It is necessary to avoid:

  • Authoritarian and over-demanding attitude of parents;
  • Attitude of accommodation and discouragement
  • Overprotective attitude

- Spanish Federation of Spina Bifida and Hydrocephalus Associations (FEBHI)

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