Getting the news
The doctor confirms that the pregnancy test is positive, and right away you run out and buy booties and blankets and start dreaming of what the new arrival will look like. But, then the doctor tells you that another test is also positive... and your dreams are stomped into the dirt.
Your baby has Down syndrome, and as far as you're concerned, it's the end of all your joy and expectation.
It doesn't have to be that way. Your dreams have only detoured slightly -- they haven't ended. Down syndrome is a genetic disorder in which cells don't replicate properly, resulting in the attachment of an extra chromosome, usually the 21st. This is known as Trisomy 21, and is the most common form of Down syndrome. Since it is a faulty cell division, this means that you, in no way, did something to cause your baby to have this disorder. Although there is a type of Down syndrome that is hereditary, Trisomy 21 is merely the random result of a faulty cell division.
Dealing with a range of emotions
Having a baby with Down syndrome can be an eye opening and fulfilling new part of your life. There is risk involved with virtually any pregnancy, and finding out your baby will have special needs is not a reflection of any wrongdoing. It's merely a different door opening up to you and what's on the other side may surprise you.
It is, however, normal for you to feel discouraged, even resentful about having a baby with Down syndrome. Most mothers experience, to one degree or another, these kinds of feelings, and often a measure of guilt. As you begin to build both awareness and an understanding about Down syndrome and erase some of the more common stereotypes, you will find yourself anticipating the birth of your baby, rather than dreading it.
Medical advances improve quality of life
Every year in the United States, one in every six to eight hundred babies born has Down syndrome. It is a popular misconception that these children are a rarity. In fact, Down syndrome is the second most common birth defect, just after Cerebral Palsy.
More surprising is that the past ten years have yielded some fascinating new insights about this genetic disorder. Recent medical advances now make open-heart surgeries almost commonplace. Every day, scientists discover another of the myriad of possibilities for these children both medically and educationally. Life expectancy increases with nearly every generation of children born, and new and more understanding educational systems afford these children a wealth of possibilities to help them reach their fullest potential. Even among children with Down syndrome, each child is unique and possesses a wide range of abilities and medical concerns. For instance, just because a particular child is born with a heart defect, that alone does not determine the child's mental ability. These two aspects are as far removed from each other as night is from day. Physical concerns do not reflect mental abilities. Even though one may affect the other, there is rarely a correlation between the two.
Don't panic and don't lose heart, your baby may or may not have any significant medical problems at all. Furthermore, even if your baby does have one or more of the more common concerns such as heart, intestinal, thyroid, or eye problems, modern medicine provides treatments with impressive success.
Educate yourself and seek support
It is important for each expectant parent to absorb much of the information about Down syndrome at a comfortable rate. Don't rush yourself out of a need to know everything there is to know. The last thing you need right now is to put too much stress on yourself. Take it slow and don't assume everything you learn will apply to your baby.
There are a variety of books, Web sites and organizations that can provide both information and understanding. Yes, that's right, understanding. Knowing about Down Syndrome only gives you half the picture -- understanding this genetic condition will help you to feel more secure and be better prepared for your new arrival.
Of all the possible sources you can probe, finding another parent who has a child with Down syndrome can be the most rewarding. Your local school district's Special Education program should be able to put you in touch with someone. Also, Human Resources may be able to help you make contact as well as inform you about the many early intervention programs that are available for your baby.
If you still can't find someone, or if your town has limited resources, there are an enormous amount of Web sites to choose from. Check out several to get an idea of the tone and attitude. As with any medical condition, there are people with agendas and it's important for you to find a community of parents who only want to help and comfort you. Don't give up, it may seem like a lot to go through, but you will find what is just right for you. A close confidant who understands what you're going through will prove to be an incredible source of strength. Don't forget support groups or just a close friend who is willing to lend an ear.
Preparation is key
Why do all of this, you ask? Well, it's simple, if you're going to run a marathon, you prepare for it in advance. All mothers make preparations for the tiny, new bundle, it's just that mother's of children with special needs have to go an extra mile. Believe me, it's more than worth it.
Above all: don't lower your expectations. Before you knew you were having a baby with Down syndrome, you were full of joy and high expectations -- and you still should be. Don't lose sight of the fact that even though your baby has Down syndrome, he's still your baby. One extra chromosome can't, and shouldn't, change the bond between parent and child.
Like any other baby, this one will surprise, delight and test you. Expect the unexpected and take joy in it.