Prenatal Testing and Diagnosis
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.
A Promising Future Together
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.
NDSC Down Syndrome An Expectant Parent's Guide
New Parent Guide
Announcing the Birth
Written by Nancy J. Murray, MS and William I. Cohen, MDMost 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.
Where Do We Start?
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.
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.
La Leche FAQ: Breastfeeding
Our FAQs present information from La Leche League International on topics of interest to parents of breastfed children. Not all of the information may be pertinent to your family’s lifestyle. This information is general in nature and not intended to be advice, medical or otherwise. If you have a serious breastfeeding problem or concern, you are strongly encouraged to talk directly to a La Leche League Leader. Please consult health care professionals on any medical issue, as La Leche League Leaders are not medical practitioners.
How wonderful that you want to give your baby the precious gift of breast milk! Babies with Down syndrome experience special benefits from breastfeeding beyond the myriad of advantages to healthy newborns:
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Breastfeeding
Babies with special needs are often bombarded with a variety of health problems early on. Those babies who have Down syndrome often face respiratory tract infections and bowel problems. They can benefit from the gentle protection human milk provides. Breastfeeding also helps establish a bond in the midst of the strong emotions and high stress surrounding the birth of a child who has special needs.
Down Syndrome Neonatal Health Care Guidelines
(Based on “Health Supervision for Children with Down Syndrome” as published in Pediatrics August 2011)
Down Syndrome Infant Health Care Guidelines
From First Eye Contact: Speech and Communication in Babies with Down Syndrome
Written by Ann Nobis, Speech-Language PathologistAnn Nobis, Speech-Language Pathologist
From first cry, to first look, to first smile, to first sound, to first thought, to first word, to first expressed idea, your baby will communicate with you and continue to grow with his or her communication skills throughout life. Your baby has been born with the innate ability to learn to communicate as all babies have been.