Trisomy 21, better known as Down syndrome, is the most common chromosomal abnormality in humans. People with Down syndrome vary widely in how they are affected, but health problems and lagging development are common. Children with Down syndrome are special needs children who require special parents. The following are some guidelines that my wife and I have subscribed to. We hope they will help you with your journey.

Step 1

Take care of yourself. When you first learn that you are the parent of a child with Down syndrome, you can feel overwhelmed. It helps to talk to other parents in the same situation. Contact the National Down Syndrome Society about support groups and other resources in your area.

Step 2

Use attachment parenting to promote a strong bond with your child. By responding to her emotional cues, you can better to sense what she needs when she can’t tell you. Involve other family, particularly siblings, in raising a child with Down syndrome. Everyone benefits from these relationships.

Step 3

Find a good medical practitioner. People with Down syndrome are subject to many medical problems, with heart defects, vision and hearing problems most common. They should be screened by cardiologists, ophthalmologists and audiologists.

Step 4

Enroll your child in Early Intervention Services soon after birth. Therapists and early childhood teachers come to your home to work on your child’s development. Physical and speech therapies are usually indicated due to delays in these areas. Some degree of mental retardation may be present as well. By age three, your child is eligible for services through the school system. Learn all you can about special education services and rights in your state.

Step 5

Learn from professionals what you can do at home to help your child develop. Children with Down syndrome often have weak muscle tone and can benefit from movement therapy. To help compensate for speech delays, you might teach your child sign language so that he can let those around him know what he wants.

Step 6

Explore the role of diet in your child’s life. Some people believe that people with Down syndrome have more difficulty with the typical American diet of high sugar, additives and preservatives. Try natural foods. If your child is subject to frequent ear infections, limit produce mucous-producing foods. Ask your doctor whether nutritional supplements like alpha-ketoglutaric acid are needed.

Step 7

Enjoy and Love your child. Just like many things in life, parenting is improved by a good attitude. Down syndrome children are affectionate and approach life with an enviable joy. Parents, family and friends can profit from time spent with people with Down syndrome.

What is Down Syndrome?

Down syndrome is a genetic disorder that delays in physical and intellectual development. The condition varies in severity, so developmental problems may range from mild to serious.

Down syndrome is the most common genetic cause of severe learning disabilities in children, occurring in one in every 800 infants. Every year, as many as 6,000 babies are born with Down syndrome in the United States. The condition is named after John Langdon Down, the doctor who first identified the syndrome.

There’s no medical cure for this condition. But increased understanding of Down syndrome and early interventions make a big difference in the lives of both children and adults with Down syndrome.

Diagnosis

Down syndrome is usually identified at birth or shortly thereafter. Initially the diagnosis is based on physical characteristics that are commonly seen in babies with Down syndrome. These include low muscle tone, a single crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. The diagnosis must be confirmed by a chromosome study (karyotype). A karyotype provides a visual display of the chromosomes grouped by their size, number and shape. Chromosomes may be studied by examining blood or tissue cells.

Cause

Down syndrome is usually caused by an error in cell division called nondisjunction. It is not known why this occurs. However, it is known that the error occurs at conception and is not related to anything the mother did during pregnancy. It has been known for some time that the incidence of Down syndrome increases with advancing maternal age. However, 80% of children with Down syndrome are born to women under 35 years of age.

Learning & Development

It is important to remember that while children and adults with Down syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them.

Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different. Early Intervention services should be provided shortly after birth. These services should include physical, speech and developmental therapies. Most children attend their neighborhood schools, some in regular classes and others in special education classes. Some children have more significant needs and require a more specialized program.

Some high school graduates with Down syndrome participate in post-secondary education. Many adults with Down syndrome are capable of working in the community, but some require a more structured environment.

Health Issues

Many children with Down syndrome have health complications beyond the usual childhood illnesses. Approximately 40% of the children have congenital heart defects. It is very important that an echocardiogram be performed on all newborns with Down syndrome in order to identify any serious cardiac problems that might be present. Some of the heart conditions require surgery while others only require careful monitoring. Children with Down syndrome have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions. However, with appropriate medical care most children and adults with Down syndrome can lead healthy lives. The average life expectancy of individuals with Down syndrome is 55 years, with many living into their sixties and seventies.

Pre-natal Diagnosis

Two types of procedures are available to pregnant women: screening tests and diagnostic tests. The screening tests estimate the risk of the baby having Down syndrome. Diagnostic tests tell whether or not the baby actually has Down syndrome.

Screening Tests

• At this time the most commonly used screening test is “The Triple Screen.” This is a combination of three tests that measure quantities of various substances in the blood. These tests are usually done between 15 and 20 weeks of gestation.
• Sonograms (ultrasounds) are usually performed in conjunction with other screenings. These can show some physical traits that are helpful in calculating the risk of Down syndrome.
• Screening tests do not accurately confirm the diagnosis of Down syndrome. In fact, false positives and false negatives frequently occur.

Diagnostic Tests

Three diagnostic tests are currently available:

• Amniocentesis is performed between 12 and 20 weeks gestation.
• Chorionic Villus Sampling (CVS) is conducted between 8 and 12 weeks.
• Percutaneous Umbilical Blood Sampling (PUBS) is performed after 20 weeks.

These words sting more than any words that people say concerning the lives of individuals who happen to have Down syndrome. And unfortunately, they get expressed more often than you would think.   At times, they are said to parents, after they hear the news that their child, that they are expecting, has Down syndrome.  Any time is hurtful, and simply untrue, but during this critical time in a mother’s pregnancy, they are tragic.  They can often lead  parents to feel pressured  to terminate their pregnancy. Since 90% of all pregnancies, that are diagnosed in utero, end in termination, they certainly have had an effect on some.  The dignity and respect for their child is diminished by these hurtful words.  Not only do they pressure a parent to terminate a pregnancy, but they also leave a scar on the parents who choose life.  These parents will often report that they replay them over and over in their minds, when instead they should be bonding with their newborn and enjoying their blessing. Our hearts and prayers go out to parents who were told these words, while they were pregnant, and then believed them.  We can only hope to be a voice, that helps to prevent it from happening to other parents. 

Unfortunately, pregnancy is not the only time parents hear these words.  Recently, we have been made aware of the Australian Government’s response to a physician whose child happens to have Down syndrome.  The family has been denied residency because their child has Down syndrome.  Now, we are finding out this is more wide spread than was first reported.  Here is an excerpt from the latest article from The Austrailian.  ”British midwife working in a Perth hospital was refused permanent residency by the immigration department because her Down syndrome child was considered a financial burden on the country. ” 

Indeed, it is a slippery slope.  The dignity and respect for all life, begins in the womb.  When we inform a parent, who is pregnant, that their unborn baby is a burden on society, we are giving a license to the general public to believe that our children are a burden on society.  One message begets the other.  All life is precious, born and unborn. Dignity begins at conception.  We need to take an honest look at how our attitudes toward individuals in utero, have affected our attitudes toward those who are an active part of our societies.

The NDSC (National Down Syndrome Congress) has created a new video  that debunks the message of “a burden on society.” We encourage you to watch it.  They have done a beautiful job of showing the world, that indeed, we are more alike than we are different! Not a burden, but a blessing!  See for yourself!

We support the DSAWA as they work toward educating others of the dignity and respect for individuals with Down syndrome.