Friday, October 1, 2010

31 for 21: Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome

Want to know what I've spent a whole lot of time on lately? Want to know why I haven't been blogging?


I was lucky enough to get involved with a WONDERFUL project with my dear friend and now author Nancy Iannone.  Nancy and another Down syndrome mom friend of mine,  Stephanie Hall Meredith wrote this wonderful, beautiful and free book for mom's who are having babies with Down syndrome! Please support this effort - if you can personally donate, great, if not, please ask your local DS group to consider a donation! We'd love to do even more for mom's who will be having (or get a screen indicating a higher likelehood of having) a baby with Down syndrome!  Special thanks to Kan Hor from Cincinnati Children's Hospital, Violette's wonderful cardiologist for agreeing to review the cardiology section of the book!


Free Down Syndrome Pregnancy Book and Website Launching Today


DownSyndromePregnancy.org will launch on the first day of Down syndrome awareness month. Visitors will be able to download a free pregnancy book.


Sewell, NJ, October 01, 2010 –(PR.com)– Expectant parents have a new resource to help them as the await the birth of a baby with Down syndrome. The website DownSyndromePregnancy.org will launch today, featuring a free downloadable pregnancy book, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome by Nancy McCrea Iannone and Stephanie Hall Meredith.


In recent years, the area of prenatal testing has become more sophisticated, and more accurate blood tests are on the horizon for next year. Expectant parents learning about a Down syndrome diagnosis spend four to six months waiting for the birth of their baby and wondering about the future. This book is a practical resource for women who are moving forward with a Down syndrome pregnancy.


Iannone and Meredith, both parents of children with Down syndrome, recognized that expectant mothers with a prenatal diagnosis face some unique challenges that were not being specifically addressed in current literature. The authors understand the sense of isolation and grief after receiving a diagnosis and the sense of empowerment and validation that comes from understanding the condition.


The pregnancy book has been reviewed by expectant mothers, prominent leaders in the Down syndrome community, and a distinguished team of medical professionals, including Dr. Brian Skotko, a Clinical Genetics Fellow at the Children’s Hospital Boston, and Dr. Harish Sehdev, a perinatologist and Director of the Prenatal Diagnosis Unit at Pennsylvania Hospital. Other professionals on the review team included obstetrician Dr. Joann Richichi, cardiologist Dr. Kan Hor, genetic counselor Cam Brasington, and breastfeeding specialists Dr. Sarah Riddle and Dr. Sheela Geraghty.


“This publication goes beyond just being a very useful resource for couples; it also has a very human side that comes through openly and compassionately. This book points out many important thoughts that I express to my patients …. The more information that a couple has, the better prepared they are to make it comfortable and enjoyable for their family.” — Dr. Harish Sehdev, perinatologist and Director of the Prenatal Diagnosis Unit at Pennsylvania Hospital.


The audience of the book is specifically expectant mothers who are continuing a pregnancy; the book is not appropriate for women who are still weighing options about their pregnancy.

About DownSyndromePregnancy.org

Down Syndrome Pregnancy, Inc. is a New Jersey non-profit corporation whose purpose is to provide information and support to expectant parents waiting for the birth of a baby with a diagnosis or increased chance of Down syndrome, and the local Down syndrome groups that serve them.

The organization’s website, DownSyndromePregnancy.org, hosts an interactive blog and the book as a free, downloadable guide for expectant mothers. All materials are geared to non-political, honest, compassionate and informative support for those in post-diagnosis pregnancy or waiting until birth for a confirmed diagnosis.


The board of trustees for Down Syndrome Pregnancy, Inc. includes Down syndrome community leaders from all over the nation who provide direct support for expectant parents.


Trustees of Down Syndrome Pregnancy, Inc.

Melissa Kline Skavlem, President (Cincinnati, Ohio)
Stephanie Meredith, M.A., Senior Vice-President (Atlanta, Georgia)
Amy Geoffroy, Senior Vice-President (Central New Jersey, relocating to Oregon)
Sarah Hartway, R.N., M.S., Vice-President (Denver, Colorado)
Heather A. Trammell, Treasurer (Northern Virginia)
“Nancy” Iannone, B.A., J.D., Secretary and Executive Director (Southern New Jersey)

1 comment:

Courtney said...

This is fabulous! Great job!!!