Dear Health Care Professional,

Today, people with Down syndrome are achieving more than ever thought possible. People born with Down syndrome, who only twenty five years ago may have been institutionalized, are now living independently and semi-independently, obtaining paid employment, graduating from high school and attending post-secondary schools. They are musicians, artists, actors and athletes. People with Down syndrome have friendships and meaningful relationships and marry. While it is important to avoid placing unrealistic expectations on children with Down syndrome, they should be challenged to do their best and follow their dreams-just like any child.

As health care professionals, we are in a unique position to both shape parents’ first impression of their child and also to guide that child’s health throughout his or her life. From the moment of diagnosis, it is important to deal with each child as an individual with unique strengths and challenges.

The world is changing for people with Down syndrome and the medical community must also change. We must challenge ourselves to recognize and overcome our stereotypes and to treat these children and their families with the highest level of care. I believe we are up to the task.

Eric Madete
Chairman
Down Syndrome Society of Kenya

Presenting the Diagnosis

Keep the following suggestions in mind when giving a diagnosis of Down syndrome:

a.    If at all possible, give a prenatal diagnosis in person rather than over the telephone.
b.    Prenatally and postnatally, tell both parents together. Otherwise, the mother will have to tell the rest of the family by herself.
c.    A health care professional with a relationship to the mother should give the diagnosis.
d.    Postnatally, there may be clear indications of Down syndrome in the last stages of delivery. It is best to wait until the mother is in the recovery room to inform.
e.    Bring the baby into the room when discussing the physical indications of Down syndrome.
f.    Do not make a positive diagnosis until a karyotype has been done.
g.    Both prenatally and postnatally, do not express an opinion about the parents’ situation. Ask what information they would find most helpful. Give resources: support groups, early intervention centers and literature.
h.    Make sure to discuss the diagnosis and field questions from the parents on more than one occasion. Parents may not be able to retain all the information in one sitting.
i.    Most importantly, don’t try to be predictive. It is impossible to foresee the future of any child. A broad picture should be painted which recognizes every child’s capacity to develop individually.