A New (Free!) Resource for Parents of Babies with Down Syndrome
I received two unexpected phone calls in the past few months. Both came from women I know—one a friend through online writing circles, one a girl I went to church with as a teenager. Both are married, working mothers with two children. Both were pregnant with their third child. Both had opted for a new, noninvasive prenatal test and both had received results that indicated a very high likelihood that they would be giving birth to a child with Down syndrome.
Since then both of these friends have welcomed their babies—one boy and one girl, each with Down syndrome. Also since then, a new booklet for parents of new babies with Down syndrome has become available. I sent a link to this booklet to both of my friends as soon as I read it. Authors Stephanie Meredith and Nancy Iannone have created a free online resource—Welcoming a Newborn with Down Syndrome: A Guide to the First Month—that provides honest, comforting stories alongside accurate, helpful information. It is filled with facts and figures in conjunction with personal perspectives and beautiful photographs of individuals with Down syndrome. I suspect all new parents will find it a helpful guide as they enter into life with a child with special needs and welcome a new baby with Down syndrome.
The booklet runs a little over 100 pages, but it can easily be read in one sitting. The sections are comprehensive but brief—enough to be informative but not so much as to be overwhelming. This book has been vetted by doctors and genetic counselors, and it also has been reviewed by parents of children with Down syndrome. The balance of medical information and personal concern shines through. Unlike some more "neutral" articles about Down syndrome, this one begins with the assumption that life with a child with Down syndrome is ultimately good:
"Most parents find that the initial moment of learning about the diagnosis is stark and crystal clear, but the days and weeks afterwards are hazy, confusing, sometimes difficult, and often overwhelming. But, after we emerge from that cloud and live with our babies, we can't imagine our lives any other way. We develop an appreciation for their unique gifts, talents, and beauty. Now we fiercely love our children, feel a deeper appreciation for humanity and empathy towards others, and realize that life with Down syndrome is more work but also remarkably ordinary."
This booklet maintains this positive and helpful tone while addressing a host of topics: breastfeeding, finding support through early intervention, accessing financial support if needed, dealing with the relatively common need for a heart procedure or surgery. It also contains a somewhat unusual but crucial section on how to handle the insensitive, ignorant, rude, and hurtful comments that inevitably come along with sharing the news of a diagnosis of Down syndrome. The authors walk new parents through a host of scenarios, and as they explain:
"Our approach is simple: plan for the comments and create an informative, collected response—your 'crafted response.' But recognize that your gut reaction to these comments is also natural and may be something you want to share or write about in your journal—your 'candid response.'"
This section encapsulates the gift this book will be to any new parent—it acknowledges the tricky dynamics on a medical, personal, and social level —and it offers resources to navigate through all those potentially difficult experiences with honesty and hope.
It's been almost ten years since I gave birth to our daughter Penny, who has Down syndrome. I can only wish I'd had such a welcoming and comprehensive guide when she was born.