Baby May Have Down Syndrome

Your Baby May Have Down Syndrome

You are here because you have been told that, as a result of a screening test, the child you carry may have Down syndrome.

We cannot know how you feel, but you are not alone.

You have connected with a caring community of people who have been where you are now.

You may wish to meet some of those folks. View our directory of Down syndrome organizations – there is a good chance you will find one nearby.

Meanwhile, if you have been told your child may have Down syndrome, you should have been told the conclusion is not certain.

There are many pre-natal screening tests that can define the probability your child may have Down syndrome. None are definitive – in medical terms, diagnostic. Some have error factors of 40 percent. The most accurate have error factors of about five percent.

The only way to diagnose – to confirm as fact – if a fetus has Down syndrome is via procedures wherein a sample of placental tissue or amniotic fluid is taken and cells grown to produce a karyotype – a profile of the baby’s chromosomes.

Those procedures – amniocentesis and chorionic villus sampling (CVS) – are invasive, demanding insertion of catheter or needle to remove amniotic fluid or a tissue sample.

The results of your screening test indicate only that there is an increased chance that your baby has Down syndrome, and that further diagnostic testing may be helpful in your situation. If you are considering further testing , you should ask your health-care professional for referral to a genetic counselor – a professional who can help you to understand the accuracy, limitations and risks of such testing..

If an amniocentesis or CVS is recommended, you should be told the procedures carry a slight risk of miscarriage.

Please consider, this is coming at you now because you are in in an early stage of your pregnancy. There is but one reason – so you may terminate your pregnancy if Down syndrome is confirmed.

If you do not consider that an option, there is no reason to go further. Your decision should be respected.

You should not be unduly challenged regarding your decision. If you believe you have been subjected to such treatment, you may consider contacting the physician or health professional in question and notifying the office of risk-management at the hospital to file a written complaint. This will help put an end to such practices in the future.

If you have a screening that indicates your baby has an increased chance of having Down syndrome and you choose not to follow with an invasive test, you should know that a high percentage of children with Down syndrome are born with cardiovascular and gastrointestinal issues. Additional tests may detect many and you should talk with your health-care professional about those procedures and how the findings may affect your delivery and immediate post-natal care for your child.

If you choose to have an invasive test performed and receive a confirmed diagnosis of Down syndrome, we invite you to return here to gather additional information.