First info and address of physicians about Down syndrome

We hope to find more competence in hospitals
when parents are confronted with the information:
"We suspect your child having Down syndrome!"

"Life with Down Syndrome, Nr. 17"

Not always is the information given to the parents in an adequate way by the doctors.
This is the reason why we want to direct the following letter to all doctors:

Dear Doctor,
in the last months several babies with Down syndrome have been born in our area.
Medical care and supporting measures have been greatly improved fot these children in the last ten years.
But the information for parents after the birth of their baby with Down syndrome is still catastrophic!
It´s alarming what these parents still hear from experts. Some explanations about this handicap of Down syndrome are completely wrong;there are still views advocated, which have been refuted already, and the choice of words often lacks taste, does not show much sensitivity and sometimes is even embarrassing.
Some recent examples may explain this:
Right after the birth of a baby with Down syndrome a doctor remarks, "See, I´ve never had a Mongo before", and adds as a kind of consolution for the parents, "Never mind, such a little Mongo can be quite funny. He won´t live very long anyway. And if necessary, you can be pregnant again and we can take «necessary steps»that such a thing won´t happen again!"
Another doctor expressed the opinion, "These children will depend on intensive care all through their life, they will never really «grow up» and stay on the level of a five-year-old. Thay have to be regarded as being severely handicapped. This will be adifficult life for you, full of sorrow and self-sacrifice. I shouldn´t like to be in your shoes."
Doctors often question the right to live of a baby with Down syndrme. If such a baby suffers from heart disease or digestion problems additionally some doctors do not hesitate to express their conviction towards the parents that their child is not worth living.
We would like to make the following remarks:
It has been common practice for years to use the scientifically correct term ´Down syndrome´ all over the world instead of the derogative and even racist term ´mongolism´, or, even worse, trivialising forms like ´mongo´ or others.
Especially of professionals we expect that they are examples for others. One should also avoid speaking of ´Down syndrome children´ or ´Down children´. Those children are first of all children who happened to be born with this handicap.
They do neither suffer from this syndrome nor are they victims. Down syndrome is not a disease.
It is a fact that only a small percentage of people with Down syndrome ( - scientists speak of about 10 % -) can be classified as severely handicapped.
Because of their chromosome aberration and often additional further handicaps those people need life-long intensive care and help. But this is absolutely no reason to deny them their right to live.
If they regard their life being worthless and would rather prefer not being alive can almost not be judged by our standards.
Most people with a ´Trisomie 21´ can be called "normal" within the range of Down syndrome.
Having good support and schooling these people can develop in such a way that they can lead-even as grown-ups a meaningful, fulfilling and relatively independant life.
About 20 % of people with Down syndrome are regarded today as being handicapped in learning, showing abilities reading up to what we call ´normality´. If they receive the same kind of oppurtunities in the development of their capabilities as regular children, they will find their way in their later life with as much or as little assistance as other people.
People with Down syndrome have about the same life expectancy as other people. Only very young children with Down syndrome suffering from additional organic damage have a higher death-rate.
People with Down syndrome do not stay in their development on the level of a 5 - 8 years old child.
This so-called "plateau-thinking" has already scientifically been refuted. Specialists of Down syndrome all over the world are rather surprised and enthusiastic about this potential of development these children have and which nobody had assumed before. Today one can say that limits in the development of children with Down syndrome are practically unknown.
Living together with a child having Down syndrome is not regarded as a life full of sacrifices and renunciation by most parents and siblings. On the contrary most families see their child with Down syndrome as a great contribution to their lives.
Every person has his own individual strong points, his abilities and talents. So we should not try to use common clischees to describe people with Down syndrome.
It is important to see each person as a personality of his own and this is also true for people with Down syndrome.
The first grown-up people with Down syndrome already show resistance against these clischees. We should take their words seriously.
The future of children with Down syndrome is definitely positive and promising today. Their chances of receiving adequate support have never been so good before. Please convey this to parents. Rather encourage than discourage them.
We express our hope that parents of new-born with Down syndrome find doctors who are well informed and show a positive attitude towards these babies. It is absolutely important for the well-being of a new-born baby that it is accepted by its parents. By giving adequate information and sensitive advice and support to the parents it is in your hand to improve the starting conditions of the handicapped child in his family in a decisive way.

We ask you for your help!

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