Question

a. How would you describe the advantages and disadvantages of prenatal testing for DS?

b. What information do you think would be helpful to share with families?

c. What are your reactions to reading the brochure for the Down Syndrome Program at Children’s Hospital? Do you think that the program is providing families with the knowledge and support they need?

Answer 1

How would you describe the advantages and disadvantages of prenatal testing for DS?

Down's syndrome is a problem with the genetic chromosome. A person with DS has an extra copy of chromosome 21 [Trisomy] in the cell. An individual with Down's syndrome can usually be recognized by their typical features. It causes learning disability for a lifetime. Also, they have I increased the risk of developing certain medical problems.

Advantages and disadvantages

1. Parents choice: that whether they want to terminate or go ahead with the pregnancy
2. Parents get prepare: The result can prepare the parents mentally for choice and future care of DS kids.
3. Correction before birth: Certain issues can be corrected or taken care before birth.
4. Psychological: It creates a lot of anxiety as well as confusion on the condition.
5. Expensive: Being on expensive side lot of people do not give an attempt.
6. Ethical: Abortion of DS child is not considered ethical as per many religion.
7. Fatal Damage: Invasive procedure like Amniocentesis can cause damage.
8. Possible pregnancy loss. Although the risk is small, but.
9. The test can not predict 100% result.

What information do you think would be helpful to share with families?

Its important for Doctor to share all the information with respects to expecting baby: Understanding of what the issue, Severity, the possibility of future adjustment, coping attitude, behavior toward the kid. Guiding what is right or not. They have full right to decide to go ahead or not go ahead.

What are your reactions to reading the brochure for the Down Syndrome Program at Children’s Hospital? Do you think that the program is providing families with the knowledge and support they need?

My personal experience, hospitals have become business institutions. Though the brochure sounds very informative and carry bookish language. While reading, an individual gets only negative and non-optimistic behavior only. Its important for the family to take multiple points of views and take a correct decision.

Stating example of my kid: My Son has development delays like holding neck, turning over, tummy time etc. Like he started walking at 2 years and 6 months. He still does not talk. I have been to best of the doc (pediatric neurologist), who said that my son is the Cerebral palsy case. I could not believe because I do not see any symptoms of CP except the muscle issue. I have been to many DOC, finally my all question are answered by one doc that, my has no neurological issue. It is purely environmental and parenting issue. With therapy, he will cope up. And believe you me, he is doing brilliantly well.