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7 Common questions about life with down syndrome

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After knowing that the baby has Down Syndrome, parents should calm down and seek as much information about what Down Syndrome is, what are its characteristics, what are the health problems that the baby may face and what are the treatment possibilities that can help promote autonomy and improve your child's quality of life.

There are parents' associations such as APAE, where it is possible to find quality, reliable information and also the professionals and therapies that can be indicated to help your child's development. In this type of association, it is also possible to find other children with the syndrome and their parents, which can be useful to know the limitations and possibilities that the person with Down Syndrome may have.

1. How long do you live?

The life expectancy of a person with Down syndrome is variable, and can be influenced by birth defects, such as heart and respiratory defects, for example, and appropriate medical follow-up is carried out. In the past, in many cases life expectancy did not exceed 40 years old, however, today, with advances in medicine and improvements in treatments, a person with Down syndrome can live more than 70 years of age.

2. What tests are needed?

After confirming the diagnosis of the child with Down Syndrome, the doctor may order additional tests, if necessary, such as: karyotype that must be performed until the 1st year of life, echocardiogram, blood count and thyroid hormones T3, T4 and TSH.

The table below indicates which tests should be done, and at what stage they should be performed during the life of the person with Down Syndrome:

At birth 6 months and 1 year 1 to 10 years 11 to 18 years Adult Old man
TSH Yes Yes 1 x year 1 x year 1 x year 1 x year
Blood count Yes Yes 1 x year 1 x year 1 x year 1 x year
Karyotype Yes
Glucose and triglycerides Yes Yes
Echocardiogram * Yes
Eyesight Yes Yes 1 x year every 6 months every 3 years every 3 years
Hearing Yes Yes 1 x year 1 x year 1 x year 1 x year
Spine X-ray 3 and 10 years If necessary If necessary

* The echocardiogram should only be repeated if any cardiac abnormalities are found, but the frequency should be indicated by the cardiologist who accompanies the person with Down's Syndrome.

3. How is the delivery?

The delivery of a baby with Down's Syndrome can be normal or natural, however, it is necessary that the cardiologist and a neonatologist must be available, if he is born before the scheduled date, and for this reason, sometimes the parents opt for cesarean section, already that these doctors are not always available at all times in hospitals.

Find out what you can do to recover from cesarean section faster.

4. What are the most common health problems?

The person with Down Syndrome is more likely to have health problems such as:

  • In the eyes: Cataract, pseudo-stenosis of the lacrimal duct, addiction to refraction, and glasses must be worn early. In the ears: Frequent otitis that can favor deafness. In the heart: Interatrial or interventricular communication, atrioventricular septal defect. In the endocrine system: Hypothyroidism. In the blood: Leukemia, anemia. In the digestive system: Alteration in the esophagus that causes reflux, stenosis of the duodenum, aganglionic megacolon, Hirschsprung's disease, Celiac disease. In muscles and joints: Weak ligaments, cervical subluxation, hip dislocation, joint instability, which can favor dislocations.

Because of this, it is necessary to follow a doctor for life, performing tests and treatments whenever any of these changes appear.

5. How is the child's development?

The child's muscle tone is weaker and therefore the baby may take a little longer to hold the head alone and therefore parents should be very careful and always support the baby's neck to avoid cervical dislocation and even an injury in the spinal cord.

The psychomotor development of the child with Down Syndrome is a little slower and so it can take a while to sit, crawl and walk, but treatment with psychomotor physiotherapy can help him reach these milestones of faster development. This video has some exercises that can help you keep your workout at home:

Until 2 years of age, the baby tends to have frequent episodes of flu, cold, gastroesophageal reflux and may have pneumonia and other respiratory diseases if not treated correctly. These babies can get the flu vaccine annually and usually get the Respiratory Syncytial Virus vaccine at birth to prevent the flu.

The child with Down Syndrome can start talking later, after 3 years of age, but the treatment with speech therapy can help a lot, shortening this time, facilitating the child's communication with family and friends.

6. How should the food be?

The baby with Down Syndrome can breastfeed but due to the size of the tongue, the difficulty of coordinating suction with breathing and the muscles that get tired quickly, he may have some difficulty in breastfeeding, although with a little training and patience. she may also be able to breastfeed exclusively.

This training is important and can help the baby strengthen the muscles of the face that will help him talk faster, but in any case, the mother can also express the milk with a breast pump and then offer it to the baby with a bottle.

Check out the complete Breastfeeding Guide for Beginners

Exclusive breastfeeding is also recommended until 6 months, when other foods can be introduced. You should always prefer healthy foods, avoiding soda, fat and frying, for example.

7. What is school, work and adult life like?

Children with Down Syndrome can study in the regular school, but those who have a lot of learning difficulties or mental retardation benefit from the special school. Activities such as physical education and artistic education are always welcome and help people understand their feelings and express themselves better.

The person with Down Syndrome is sweet, outgoing, sociable and is also able to learn, can study and can even go to college and work. There are stories of students who did ENEM, went to college and are able to date, have sex, and even, get married and the couple can live alone, with only the support of each other.

As the person with Down Syndrome has a tendency to put on weight the regular practice of physical activity brings many benefits, such as maintaining the ideal weight, increasing muscle strength, helping to prevent joint injuries and facilitating socialization. But to ensure safety during the practice of activities such as gym, weight training, swimming, horseback riding, the doctor may order X-ray exams more frequently to assess the cervical spine, which may suffer dislocations, for example.

The boy with Down's Syndrome is almost always sterile, but girls with Down's Syndrome can become pregnant but have a high chance of having a baby with the same Syndrome.

7 Common questions about life with down syndrome