welcome baby!

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Welcome expectant and new parents, grandparents and family members!   

You have probably found us because you have recently had a baby with Down syndrome or have been told that the baby you are expecting is likely to have Down syndrome. Whatever your circumstance, may we begin our conversation with, “Congratulations! We look forward to meeting you and your little one." 

We know not everyone who has a recent diagnosis is ready to jump into a new community – and that is ok. Right now, we encourage you to take your time to gather information, formulate your questions and process your emotions. If you want help with any of that, we are here for you! If you want to wait a little longer, that’s ok – we will be here when you are ready! In the meantime, we have a list of resources we think will help you through this process.

In the early stages of a diagnosis, families experience a range of emotions. This is completely normal! You are in a safe space. We want to help you learn about Down syndrome so you can better understand what has been told to you. Oftentimes, the way families are told about their child’s diagnosis is not ideal. Many medical professionals only tell families about the limitations their child may face with Trisomy 21. If the words, “I’m sorry...” were spoken at this time, we are truly sorry. That is not how you should have been told.

The truth is, that is only a small part of the story and does not give you the complete picture of what lies ahead. It is our experience – with nearly 2,000 families – that the information shared with families at the time they receive a diagnosis and what they actually experience are vastly different scenarios.  

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 The FOUNDATION believes that when POTENTIAL is given OPPORTUNITY the outcome is SUCCESS. We are here to support you throughout your journey. Just like all new things, there are many stages of understanding. Wherever you are in your process, we are thankful you have found The FOUNDATION and hope we can make a difference in your life.  

It is our experience that when families connect with an organization like ours where they can meet others who have traveled a similar path, the journey becomes easier – and believe it or not, it can even be fun. You may not believe that at this particular time, which is ok. Our job is to help you obtain the information, support and help you need, but most importantly, we want to give you HOPE!  

New parents often find this "Welcome to Holland" story very helpful in articulating how they feel about a diagnosis. 

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• Welcoming a Newborn with Down Syndrome book, which you can download here. 

This book offers support and accurate, reliable information to the new parents of a baby with Down syndrome. The book covers topics like breastfeeding, adjusting to a diagnosis, preparing siblings, understanding medical issues, preparing for the future, and, most importantly, it shares diverse stories about the daily lives of families whose children have Down syndrome at different ages.

“Raising a child with Down syndrome is a journey, one filled with many joys and thrills, despite some occasional challenges. This must-have book helps new parents take confident first steps based on accurate and up-to-date information.” — Dr. Brian Skotko, Co-Director, Down Syndrome Program, Massachusetts General Hospital.

• Babies with Down Syndrome book is a guide for new parents that covers all aspects of care for babies and young children with Down syndrome. It includes daily care, family life, intervention, education and legal and medical issues.
•  Bright Expectations (BE) is Florida’s site dedicated to helping our residents with unique abilities find the support, resources, and inspiration they and their families need to break barriers, defy lowered expectations, and achieve the brightest futures they can imagine. 

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If you found us because you have had a prenatal diagnosis, you may find these resources helpful:

• Understanding a Down Syndrome Diagnosis prenatal booklet has accurate, balanced, and up-to-date information about Trisomy 21 along with helpful resources.

• The Light at the End of the Tunnel brochure comprises stories from couples who received a prenatal diagnosis. In this brochure, the couples share what information was helpful to them.  

• Brighter Tomorrows and National Down Syndrome Congress are additional expectant parent websites to learn more.   

•  Down Syndrome Pregnancy is a wonderful resource which walks expectant couples through their pregnancies and provides many resources along with the ability to connect with other parents who have walked in your shoes. You can download a free e-book at this site as well. 

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Other publications by Down syndrome groups around the world include:

• What Parents Wished They'd Known when they received the diagnosis their child had Down syndrome for some interesting insights. 

• New Beginnings Parent Magazine - Down Syndrome Guild of Kansas City and offers inspiration and guidance on your journey.  

• Promising Future Together Booklet by National Down Syndrome Society.

• Down Syndrome Association of the UK a new parent guide 

• The Down Syndrome Diagnosis Network shares resources and parent diagnosis experiences.  

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