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Parents New/Expecting

A Message to Parents Who Have Received a Prenatal Diagnosis of Down Syndrome

At Club 21 Learning and Resource Center, we would like for you to know that you are not alone. Many of us are parents who also received a prenatal diagnosis of Down syndrome and we truly understand how difficult it is to hear that unexpected news. We are a safe place to turn to with your questions and you are invited to share your feelings with people here who understand. We pledge to you that we will reach out to you with compassion and great care. We will not judge.

There is no right or wrong way to react to a prenatal diagnosis. We all have our distinctive situations and come from unique life experiences. The thing that we all have in common, however, is that we all have hopes and dreams for our children. That extra 21st chromosome just usually isn't part of the plan as we set out to start our families.

Some expectant parents react by experiencing intense emotions at first: shock, dismay, fear, anger, etc. Please know that such emotions are a perfectly normal response. Many expectant parents enter a time of decision-making. We offer to you the opportunity to speak with experienced parents who can answer your questions and provide a realistic picture of raising a child with Down syndrome. We will answer your questions honestly and do our best to describe the joys and challenges we have experienced in our own personal journeys.

We understand that not all birth families feel they are able to meet the needs of children with Down syndrome. The National Down Syndrome Adoption Network provides information to birth families who may be seeking alternatives to parenting as they prepare for the arrival of their child. The network currently has over 200 registered families, each waiting to adopt a baby with Down syndrome.

Other expectant parents are surprised and sad at first, but they make plans to welcome the baby into their lives. They gather as much information as they can and become determined to make adjustments during the pregnancy so that the birth will be a joyous occasion. Some are able to let go Down Syndrome Pregancy.org was established to provide information and support to expectant parents preparing for the birth of a baby with Down syndrome.  It includes information, material, blogs and discussion board.

Often an opportunity to speak with other parents who have experienced what you are experiencing can be invaluable. Club 21’s Parents First Call Program is a volunteer group of trained parent mentors available 24/7 to listen, share, answer questions, and provide valuable information.  If you would like to speak with a First Call parent who also received a prenatal diagnosis, please call 626-844-1821 or e-mail nancy@clubtwentyone.org.

Wherever you find yourself this moment, please know that we care and we will try to meet your needs for information and support at this time.

Resources for Prenatal Diagnosis

We Hope these Prenatal Diagnosis Resources are Useful!

National booklet "Understanding a Down Syndrome Diagnosis" 

The 2011 edition of "Understanding a Down Syndrome Diagnosis" contains the latest medical and developmental information about people with Down syndrome as well as local and national resources, pregnancy options and helpful visuals and graphics. This booklet has been reviewed by all the major medical organizations involved in expectant mothers’ health. To request a copy of this booklet, call 800-664-MDSC (6372) or e-mail scullen@mdsc.org. You may also download a digital copy here.

Understanding a Diagnosis of Down Syndrome

Down Syndrome: An Expectant Parent’s Guide

Down Syndrome Pregancy.org was established to provide information and support to expectant parents preparing for the birth of a baby with Down syndrome.  It includes information, material, blogs and discussion board.

“Light at the End of the Tunnel” was written for parents who receive a prenatal diagnosis of Down syndrome. The latest format was designed by the NDSC using the original text supplied by the Down Syndrome Association of Orange County (DSAOC). This reprint is made possible though a partnership between NDSC and DSAOC, and through the permission of the author, Linda Chan Rapp.

A Promising Future Together: A Guide for New Parents of Children with Down Syndrome (Video). This video features families discussing different stages in their children’s lives, as well as developmental pediatricians and other professionals giving information about medical, social and educational issues for families of children with Down syndrome. The video covers early intervention, local and national resources and health care screenings that can help their children achieve their full potential.

A Promising Future Together: A Guide for New Parents of Children with Down Syndrome (PDF), or call 1-800-221-4602 to order a complimentary copy of this publication in English or Spanish.

Brighter Tomorrows, a web-based resource on receiving a diagnosis of Down syndrome prenatally or at birth. This cost-free site provides answers to questions that families and prospective parents may have at this critical moment in their lives. In both English and Spanish.

A free, downloadable book for expectant parents who have made the decision to continue their pregnancy, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome, is available here. Includes strategies for coping with a Down syndrome diagnosis, medical guidelines for the first year, and support resources. 

Additional Resources

Here are some resources that we believe you will find very helpful:

 

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