Expectant Parents Introduction

Hello Expectant Parent

You are here because you have unexpected news – your baby may have Down syndrome.

You are not alone. You have connected with thousands of people who have been where you are.

We know you’ve embarked on a strange and, perhaps, frightening passage and are considering decisions you may never thought you’d have to make.

We created this branch for parents who have either just been told the child they are expecting may have or has Down syndrome or have received a recommendation to have a screening or diagnostic test for Down syndrome performed.

If you would like to discuss any aspect of what is offered here, please call the National Down Syndrome Congress, toll free, at 1-800-232-NDSC (6372), Monday though Fridays from 9:00 AM to 5:30 PM eastern time.

Screening Tests Recommended
If a screening test has been recommended, please view Pre-natal Screening Tests.

Your Baby May Have Down Syndrome
If the results from a prenatal screening test indicate your child may have Down syndrome, please
view Baby May Have Down Syndrome.

Need a Directory of Down Syndrome Related Organizations? Please view our Affiliate Directory.

If you have a diagnosis of Down syndrome confirmed, please read on.

Fact Check

Down syndrome can only be confirmed, pre-natally, through an invasive test – an amniocentesis or chorionic villus sampling (CVS).

If you have been told your child has or may have Down syndrome, but have not had an amniocentesis or chorionic villus sampling (CVS), you likely received a prenatal screening test. If so, please click here.

If you have a confirmed diagnosis, please read on.

You are not alone. You are now part of a vital, caring community. We are all around you, ready when you are to provide support, encouragement and facts.

As a first and very important step, please connect with the local Down syndrome organization closest to you. Click here, for a directory of organizations affiliated with the National Down Syndrome Congress.

Most local organization can connect you with parents who have received a pre-natal diagnosis of Down syndrome. They are ready to listen, talk and offer valuable information on the challenge and rewards of parenting a child with Down syndrome.

Meanwhile, we offer the following preliminary information. This site is packed with all kinds of facts on Down syndrome. When you are ready to learn, please browse through it.

Go slow. You may feel pressed to make difficult decisions quickly. Please don’t.

Please resist whatever pressure you feel you are under and take time – for yourself and your child.

Gather facts and discuss all with your spouse or partner, friends and family.

Then, and only when you are ready, make your own informed choice.

You have choices. There are several paths you may follow. Each should be explained clearly, objectively, factually. Any choice you make should be respected.

One may surprise. There is a substantial waiting list of people who want to adopt a child with Down syndrome. If you would like to know more, please click here: http://www.dsagc.com/programs_adoption.asp

Go Easy. It is easy to overload on information.

You cannot now know what is relevant to your situation – most isn’t. Please don’t worry now about the future – about where your child might be at 6, 16 or 46. Nobody can say about your child or any child and it is irresponsible to predict.

Fresh Facts

Myths and misconceptions about the syndrome abound and, unfortunately, are often held by medical professionals.

Even what has been taken as fact changes rapidly.

If you wish to read about the syndrome, please ignore anything published before 2002 and look for more current material.

No Change Needed

There is nothing in the news that changes anything about your pregnancy. Assuming you are healthy, enjoy the coming months.

The same is true for the first few years of your child’s life. Your baby will be just that, a baby, demanding love, care, stimulation – and clean diapers. Enjoy!

There are exceptions: Many babies with Down syndrome present with cardiovascular and gastrointestinal issues. Some can be detected prenatally and you should consult with your medical professionals about how they may affect your delivery and your child’s post-natal care.

Please do not become overly alarmed. Most such issues can be dealt with surgically in the first months or year of life.

A Baby

Some claim a child with Down syndrome is burdensome.

We disagree. Nothing about Down syndrome is implicitly burdensome.

Raising a child with Down syndrome has it challenges, but being a parent is challenging, regardless of your child’s abilities.

All anybody knows about your baby is that he or she will be a baby – an exciting packet of potential waiting to become whatever he or she can be.

Your baby will do what babies do.

Cry, gurgle, eat, sleep. And enchant.

Eventually he will walk, run, jump and play. .

She will talk and go off to school with the other kids.

As your child grows, he will frustrate and try your patience, but she will also reward you in ways you cannot imagine.

He will learn. She may be an avid learner of what other kids learn.

Your child will probably graduate from high school and may continue on in post-secondary education.

As an adult, your child can get a job, be an enthusiastic and productive employee, live in a variety of residential settings and enjoy a rich and satisfying life.

The Future

Coming to terms with what your children can and cannot do is a bittersweet part of parenting. As your child grows you will see strengths and weaknesses. You may have dreamt your son will be a doctor only to learn that he wishes to be a painter. Or that your daughter will be an opera diva only to find she is tone deaf.

You may feel all that has been shattered by the diagnosis.

Please don’t go there.

We cannot predict. Nobody should.

We can only tell what our kids have achieved.

They are avid learners, eagle scouts, class leaders, homecoming royalty, long distance swimmers, published authors, poets and painters, musicians. They drive cars, own homes, have jobs, fall in love.

Some are super stars.

Mostly, they are ordinary people – people we treasure.

They have become what they are because they had the potential and we believed in them, loved and support them.

How then are they different than any other children?

They are, in fact, more alike.

Facts

Down syndrome is a chromosome variation. There are three types: Trisomy 21, mosaicism and translocation. Trisomy 21 is by far the most common, however, there are few differences among the three. Each type results in extra chromosomal material within the cells of the developing baby.

This about individuality – all that can be said about Down syndrome are generalities that may not apply to your child.

Down syndrome is a syndrome – a set of symptoms common among people with all forms. Few have all; many have few.

  • Down syndrome is one of the most common causes of mild to moderate cognitive impairment and developmental delay.
  • It affects about one in every 800 children born in the United States.
  • 350 thousand families in the United States are affected by Down syndrome.
  • It has no known cause nor cure and affects people of all races and economic levels.

What causes the extra chromosomal material to be passed on during conception is not well understood. Best we know it is a molecular-accident. There is nothing you could have done differently before or during your pregnancy – it is nobody’s fault.

Eighty percent of babies with Down syndrome are born to women under age 35.

That may surprise. Many think it most common among children of older mothers. The chance that a baby will have Down syndrome goes up as the age of the mother increases, suggesting most are born to moms in their thirties or older.

Pregnancy, however, is more common among younger women. So, while the incidence is lower, the actual number of babies with Down syndrome born to women in that age group is far higher.

We do not want to paint an overly rosy picture. Down syndrome affects each individual individually and does so across a very broad span. Where an increasing number of our sons and daughters grow to be healthy, successful and independent, some individuals with Down syndrome have significant health issues, struggle in school and are quite dependant on others as adults.

We know you may find it difficult – please recall, we have been there – but we suggest focusing on the positive – the odds are good your dreams will come true.