Information for New Parents

A Course for Action
As a parent of a newborn child with Down syndrome, you may experience conflicting emotions. You may feel joy at the birth of your baby, yet you may fear the future. You may grieve for the child of normal ability that you expected (a natural step in accepting your child with challenges). You may wonder if you could have done something to prevent your child from having Down syndrome. It is important to realise that feeling negative or disheartened is normal and that there is no need to feel guilty or blameworthy over these feelings. The following is a possible way to look at the next few months. Even if you may already have a course planned, you may wish to consider these suggestions.

For the next couple of months, relax and get to know your baby. You can begin to educate yourself on Down syndrome by reading books and watching videos. A list of current materials and resources are included on our website. When you are ready, you may wish to join a parent group. These can be a rich source of information and emotional support. It is also important to make the distinction that your child having Down syndrome is secondary to who he/sh is and that they should be referred to as a child with Down syndrome rather than a Down syndrome child.

Children with Down syndrome vary in their physical and mental development. The range is as great as the overall population. Some are close to normal, some are much slower, and many fall somewhere in between. In addition to your medical doctor, specialists like pediatricians, physiotherapists, occupational therapists, speech therapists and infant development consultants are all valuable resources available to help you. You can contact them through your doctor, Health Unit or Health Department.

You will hear of different therapies which claim success in helping children with Down syndrome. Some of these will not be universally accepted under current professional practice standards. Before you consider putting your child into one of these programs, investigate the therapy fully. As well as reading the literature, ask questions of all parents and professionals whom you know are knowledgeable on the plus and minuses of the therapy.

Whatever your course of action, evaluate it periodically to be sure it is working to develop all aspects of your child.

Frequently Asked Questions
What is Down syndrome?
Down syndrome is a genetic condition involving the 21st chromosome. It is one of the most common genetic birth disorders, affecting between approximately one in 700 to 900 babies. This condition results in developmental delay, some unique physical features and an increased chance for some health conditions.

What causes Down syndrome?
Down syndrome results from a genetic imbalance in cells caused from an extra set of genes on chromosome 21. In human reproduction, the egg cell of the mother and the sperm cell of the father start out with 46 chromosomes. The cells undergo division where the 46 chromosomes are divided in half. When a sperm with 23 chromosomes fertilizes an egg with 23 chromosomes, the baby ends up with a complete set of 46 chromosomes.

In the case of Down syndrome, an error occurs when the 46 chromosomes divide in half and either an egg or sperm cell keeps both copies of the 21st chromosome instead of just one copy. If this egg or sperm is fertilized, the baby ends up with three copies of the 21st chromosome and this is called "trisomy 21" or Down syndrome.

Three types of Down syndrome:

Trisomy 21 is the most common type where each cell in the body contains an extra chromosome 21. This occurs in 95% of individuals with Down syndrome.
Translocation is where an extra part of chromosome 21 is attached or "translocated" to another chromosome.
Mosaicism is the result of an error in cell division soon after conception, resulting in some cells having 46 while others have 47 chromosomes.

How often does Down syndrome occur?
In 2002 there were 82 babies born with Down syndrome in British Columbia.

80% of all babies born with Down syndrome are born to mothers under the age of 35, although it is known that the chance increases with maternal age.

The same incidence applies to all races and economic levels. Recent research shows that slightly more males than females are born with Down syndrome in comparison with the general population.

Are there any special medical considerations for a child with Down syndrome?
Yes. There are some health conditions which may require intervention and treatment. Most do not delay the child’s developmental progress when properly managed.

Hypotonia : Children with Down syndrome have varying degrees of hypotonia or "low tone." Both fine and gross motor movements are affected and balance and coordination skills are slower to develop. Thus, children reach developmental motor milestones (i.e., learning to run or tie shoes) at later ages than their peers. Frustration or avoidance in attempting new activities is common as success requires more support, effort and practice. The impact of hypotonia can be diminished by ensuring that the child is exposed to regular exercise in both gross and fine motor activities. By nurturing self-confidence and a love of learning, the child’s desire to explore will overcome the hesitancy often present due to hypotonia .
Heart : Approximately 45% of children with Down syndrome will be born with a heart abnormality. With modern paediatric cardiac surgery and care, most heart abnormalities are corrected before or during the child’s preschool years.
Vision : As children with Down syndrome have a higher incidence of eye disorders, they should be examined regularly by a pediatric ophthalmologist. It is recommended that a child have a detailed test at about age one and subsequent annual check ups until the age of ten. Afterward, checks should be done every second year.
Hearing : Children with Down syndrome tend to have smaller than normal ears. As the middle ear is also small, drainage is impaired and, thus, there is a greater likelihood of ear infections. Close monitoring of behavioural signs, effective treatments and frequent check-ups will greatly decrease the incidence of ear problems. Hearing loss can interfere with language comprehension, speech acquisition and learning ability, so it is important that routine hearing tests be performed annually until age ten, then every two years.
Atlantoaxial Instability (AAI) : This medical term describes an increased flexibility between the first and second vertebrae of the neck which could place the spinal cord at risk for injury. Physicians recommend that all children with Down syndrome be screened by X-rays at age three and then rescreened once each decade. Only 1-2% of children with Down syndrome have symptoms that may require treatment. Individuals with atlantoaxial instability should avoid activities that may put extra strain on the neck (i.e., gymnastics—especially tumbling and trampolining—diving, butterfly stroke, high jump, soccer and football).
Medical diagnoses and treatments have improved so greatly that, today, the vast majority of children with Down syndrome grow up healthy and active. Parents are very knowledgeable about their children’s health status and they should share this knowledge with their children’s physician, health and allied health professional, and teachers.

What factors affect the development of a child with Down syndrome?
There is a range of development in children with Down syndrome. Factors influencing this range, in addition to early intervention programs, include the other genes the child inherited from their family, effects of fetal distress or difficult birth, health problems resulting in low oxygen or prolonged hospitalization for health reasons.

What should we expect for our child's future?

When accorded their rights and given equal opportunities, persons with Down syndrome make a valuable contribution to society.
Infant Development Programs and early intervention program enhance their prospects for the future.
Today, children with Down syndrome live with their families, attend activities with their siblings and lead normal lives.
Increasingly, children with Down syndrome are successfully integrated into regular classrooms, and are performing at levels undreamed of in years past.
Young people are graduating from high school with vocational diplomas and some go into post-secondary education.
Many hold jobs in a variety of fields and live independently from their families.
With the help of Special Olympics and other programs, children can now be involved in all aspects of sports, music and arts.

New Parents
Early Intervention
Participation in early intervention programs is recommended for children, from birth to three years of age, with Down syndrome. Children with Down syndrome have lower muscle tone and are delayed in developing speech. The services provided in early intervention include speech therapy, physical therapy and occupational therapy.

In British Columbia, the Infant Development Program (IDP) provides early intervention services throughout the province. Consult their website to find the local IDP office serving your area of the province.

Developing early skills : a booklet about teaching early development skills in pre-school / Cecilie MacKinnon. Edinburgh, UK : Down's Syndrome Scotland, 2007.

An overview of the development of infants with Down syndrome (0-5 years) / S.J. Buckley, B. Sacks. Down Syndrome Issues and Information. Portsmouth, UK : Down Syndrome Educational Trust, 2001.

Canada Revenue Agency
The federal government, through the Canada Revenue Agency, offers to all parents the Canada Child Tax Benefit - a tax-free monthly payment made to eligible families to help them with the cost of raising a child under age 18.

To assist with raising a child with special needs the federal government provides the Child Disability Benefit (CDB). It is paid monthly to the eligible individual receiving the Canada Child Tax Benefit. The CDB is a tax-free benefit for families who care for a child with special needs under the age of 18. Before the child can qualify for the disability benefit, a qualified practitioner must certify that the child has a severe and prolonged impairment in physical or mental functions by completing the Disability Tax Credit Certificate (form T2201). Once the form is completed it must be returned to Canada Revenue Agency for their approval. You may appeal if you are refused the tax credit.

Resources
A list of further readings and websites providing information to new parents is available on our website. Click here to be taken to the list of resources.