Dear New Friend,

Congratulations on the birth of your new baby!

If you are reading this now, then you have probably found out that your baby may have Down syndrome. You are probably feeling afraid and uncertain. We all were when we first found out our children had an extra 21^st chromosome.

Take a deep breath and relax a little. We have been where you are. Your baby is a baby first, and now is the time for you to get to know and love each other. You probably have lots of questions, and hopefully you may find some answers in this notebook.

Your child has had 47 chromosomes since conception, nothing you did or didn’t do during the pregnancy caused the genetic defect. Each parent contributes 23 chromosomes to the child. In the case of Down syndrome, there is an extra 21^st chromosome which occurs when there is a faulty cell division.

Because Down syndrome is the most common viable chromosomal anomaly, there is a lot of research and reading material for you to learn from. The physical features of the syndrome were first described by John Langdon Down during the 19^th Century which is why it is called "Down syndrome" and not "Down’s Syndrome". And while it is more common for women 35 and over will conceive a child with a genetic defect, you will find many of the mothers in our group were younger than 35 when their child was born.

You may very well hold stereotypes in your own mind about what your child will be like, but try to let that go. Accept no limitations. The more you expect from your baby, the more your child will grow to fuller potential.

This notebook is yours to keep. It was compiled by local parents of children with Down syndrome and contains some good, up-to-date information including medical checklists which you will want to share with your child’s pediatrician; brochures from lots of various groups and agencies, including a wonderfully helpful booklet about breastfeeding – we have lots of parents with experience who can help you successfully nurse; information about Early Intervention programs which will help your child develop and reach a higher potential; and, perhaps most importantly, stories from other parents of children with Down syndrome.

You may find it comforting to just look at the pictures in the book first and perhaps read some of the family narratives. We would then advise you to look at the fact-sheets and share the medical articles and growth charts with your pediatrician.

As members of the Triangle Down Syndrome Network, we have found that we have learned a tremendous amount from each other. We have many families involved with our group, of all walks of life: painters and programmers, doctors and lawyers, clerks and waiters, farmers and pharmacists. We want you to know that we are here for you. While you may not feel comfortable talking to someone you do not know, we encourage you to pick of the phone and make that first contact.

We have all experienced the full spectrum of emotions that comes with having a child with special needs. If you would like to have someone visit you at home or in the hospital, or if you would like to ask questions about what it’s been like for us, please do not hesitate to call on us. If your child has specific medical issues associated with the syndrome, there are members willing to talk about their child’s experience and share their insight.

We have a 24-hour information line which will give you information about our meetings and other events. You can leave your name, address, and phone number and someone will call you back or mail the Feedback Survey on the last page of this book.

Please take your time in reading this notebook and becoming acquainted with what Down syndrome is. The first weeks after any baby’s birth are stressful and hectic for all parents. Be sure to allow yourself time to relax and get to know your precious angel.