There are two types of tests for Down syndrome that can be performed before your baby is born: screening tests and diagnostic tests. Prenatal screenings estimate the chance of the fetus having Down syndrome. These tests do not tell you for sure whether your fetus has Down syndrome; they only provide a probability. Diagnostic tests, on the other hand, can provide a definitive diagnosis with almost 100 percent accuracy.

When my son Evan was born and I was told he had Down syndrome, I did not cry for a long time.  Then, as I was waiting for my daughter to visit us in the hospital, I saw a girl a few years older with her little brother walking hand in hand to the viewing window of the nursery, and I could not hold my tears back.  I knew that my daughter would never walk her little brother that way.  I knew he would never experience the small pleasures of life I always took for granted.  In those minutes, my heart was broken, and I was overcome with sadness for both my children.

A Promising Future Together National Down Syndrome Society: New Parents A Guide for New Parents of Children with Down Syndrome  

Congratulations on the birth, or expected birth, of your baby!  We understand that your baby may have Down syndrome.  You probably have a million questions, concerns and fears right now.  That’s okay.  The most important thing to keep in mind is that this diagnosis is not as life changing as the fact that you have a new baby.  And in most ways, your baby will be just like other infants.  Every baby needs to be fed, held and most of all, loved.

There will be challenges in raising your child, but there will also be many, many joys.  It’s normal to be nervous about what lies ahead, but remember that Down syndrome is a condition your baby has, it is not who your baby is.  Now is the time to begin learning all you can about Down syndrome and this brochure is a great place to start.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide- books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

New Parent Guide

Most importantly, your baby is a baby first and secondly, a baby who happens to have Down syndrome.

It is generally suggested that parents not wait to tell friends and family members about their baby having Down syndrome. Even though telling family members and friends about your child having Down syndrome will be one of the most difficult things you face, don’t be afraid. Most parents who have a new baby want others to be happy for them and to extend best wishes.

Since each family is unique, there is no single answer to this question. There are, however, five things that you can do immediately that will aid your peace of mind as you face the beginning of this new situation.

Read a list of facts about Down syndrome.

You Are Not Alone:  For Parents When They Learn That Their Child Has A Disability
Patricia McGill Smith
Executive Director National Parent Network on Disabilities

If you have recently learned that your child is developmentally delayed or has a disability (which may or may not be completely defined), this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it.

I have a dream. My dream is born of 19 years of living with a daughter who has Down syndrome. It is a dream created by Amy as she continues to teach me, and others who know her, about life and living.

My dream is that the birth of every child be celebrated—whether or not that child has Down syndrome or some other disability. I say this with a heavy heart because I did not celebrate Amy’s birth. What a breach of faith that was! She has had to rise up against my early misgivings, sadness and disappointment. I worry that she knows somewhere deep inside that in those first few hours after her birth I didn’t want her. I wanted the baby who fit my ideals and my standards. Little did I know then that I had been given a gift—a daughter who would give true meaning to spirit, courage, love and joy. If only I’d known in those first dark hours that our life together would be more ordinary than extraordinary. If only I’d known that this daughter would more than fit my ideals and standards—she would fit hers, which are higher than mine.