Prenatal Diagnosis
If you have just gotten the news that your unborn baby has trisomy 21, or Down syndrome, please don’t despair. We know this is not what you wanted, not what you’d hoped for or what you thought you signed on for. But please try to find a little extra strength from the words of those of us who have been exactly where you now sit. You needn’t despair.
The pain and disappointment of not having a “normal” baby is very real. You will cry—a lot—at the initial thoughts of having to deal with this diagnosis. What makes it more difficult is that you may not even know if your child is a boy or a girl, or anything else about him or her. What you do know is that he or she will have this familiar-yet-unfamiliar label of “Down Syndrome.” Thoughts may run through your mind of the people you know who have trisomy 21. Worse yet, you may not know anyone with DS. Still worse, you may have only images from television or movies in your mind—outdated and inaccurate portrayals of slow-witted adults who are difficult to understand and are the subject of ridicule. You may cry all the more at the thought of your own child living such an alien life. You may be terrified, heartbroken, and confused. Sadly, your obstetrician may not have many answers for you in terms of what it means to raise a child with Down syndrome. Most of us have found that OBs may know little about children with Down syndrome—what they are capable of, what they can accomplish, what they will be like as they grow up.
On top of all this, you may be considering terminating your pregnancy, and facing the added pressure of having to make a decision in a limited amount of time. For many people, the very idea of raising a child with a disability instills in them such a remarkable fear that they are almost paralyzed. Some of us initially experienced such fear. But maybe you will be comforted by the possibility of offering up your child for adoption. Dozens and dozens of families in Pennsylvania alone are waiting to adopt a child specifically with DS. They are just waiting to help you with your burden—they can provide you with an alternative that may just make this whole situation bearable.
Again, please don’t despair. In your search of the internet and bookstores looking for information, you will undoubtedly be surprised at the lack of easily accessible information. You will comb pages and pages of websites searching for some sign of hope, an answer, reassurance, facts. You may be daunted by cold, clinical medical reports that paint a rather dull and lifeless picture of the biological patterns of children with Down syndrome. And these are the very reasons that this particular website was established—to provide a fuller, richer, more realistic and more personal picture of what life with a child with DS can be like.
It may not feel like it right now, but there is life (and joy) beyond the trisomy 21 diagnosis. Your child will be unique because he or she is yours, and you will love him or her because he or she is yours. She will smile and your heart will melt as it would with any child born to you; he will make you laugh on a day you thought you couldn’t, in a way that is more fulfilling and more joyful than you have ever experienced. Raising a child with Down syndrome will certainly bring its challenges, but raising any child brings challenges—you will just experience a different set of hurdles than with a typically-developing child. But you will love your child with Down syndrome and he or she will love you, that we can assure you.
Call a family on this website. Email one of us. Post a comment on the Forum. Ask questions, vent, mourn, cry. But keep your head up. We know where you are, we know we’re you’ve been, and we can help you get to where you need to go. Let us help you. We want to be there for you.
--CCDSS
