Down Syndrome South Afica









Guide for Health Care Practitioners


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ALWAYS REMEMBER TO!

* Celebrate the birth of the baby with the family.
* Use people first language at all times e.g. “Your baby has Down Syndrome”  NOT  “She is a Downs baby”.
* Use the baby's given name.
* The use of the word Mongoloid is NOT acceptable, EVER!
* Encouragement of placement in institutions is NOT acceptable.
* Encourage nurturing and if there is no immediate medical concerns, the baby needs to go home as soon as possible. Her needs for the most part are the same as those of any other infant.
* Down syndrome is not a disease to be cured, however you are not exempt from your responsibility to care.
* Children with Down syndrome are typically healthy children.
* A suspected or confirmed diagnosis should be given to parents as soon as possible and in private.
* The baby should be held by the parents or by the physician when the diagnosis is discussed.
* Both parents should be present for the initial diagnosis. In the case of a single mother, her significant other, birth coach or family member should be with her for support.
* There are many different ways to understand, accept and cope with information that was not expected. Don’t make judgements.
* Encourage breast feeding and suggest the staff assist her or contact a lactation consultant or speech therapist.
* Plan follow up visits to discuss other common medical concerns as parents are often overwhelmed upon the initial diagnosis.
* Accentuate the positives, e.g. “She may leam at a different rate” INSTEAD OF “She may never read.

When breaking the news to the family, you want to make sure you get it right the first time, as your words will have a lifelong impact... impact... impact.

You could start by saying:

Congratulations on the birth of your little boy/girl (use baby's name). I have some information about her/him that I need to share with you. It looks as though she/he may have Down syndrome. Well do some tests and let you know the results as soon as possible. Your baby is doing just fine and would benefit if you could start nursing her/him as soon as possible. I would encourage you to have the baby room in with you during your stay in the hospital. This would be the best thing for both you and the baby. There are great resources available on Down syndrome. Talking to other parents and obtaining information always helps. Would you like me to make contact with the Association for you? They can send or drop off some information and perhaps have a chat with you. The up-to-date information you receive from them can be very helpful.

The parents are going to be very shocked and upset by the news and will be asking many questions. Try follow their lead while applying the information on Down Syndrome. Tell them that you would prefer to make contact with us so that we can give them more valuable information.


USEFUL INFORMATION FOR DOCTORS AND HEALTH CARE PRACTITIONERS

“We have put together this useful guide for your benefit. We are the proud parents of children with Down syndrome and have been on the receiving end of having the news broken to us. Too often parents are distraught by the sudden unexpected news, we believe that by informing the parents in the right way one can minimise the trauma and improve the chances of everyone involved to quality of life. These are simple guidelines for you to follow which can make a big difference.

If you are informed about the latest research on the potential of and opportunities for people with Down syndrome, you can convey a more optimistic vision to the parents. This may in the end be the most determining factor of the child’s life as parents will bring him/her up as a child with a future.

This guide may also be useful with a prenatal diagnosis of Down Syndrome and for breaking the news to parents of children Albinism, etc....”

Download the 'Breaking the News' pamphlet for Healthcare Professionals

Medical health care guidelines and growth chart as well as the medical checklist for persons with Down Syndrome go to www.denison.edu/dsq/health00.shtml or www.com/charts/DS.htm  or www.ds-health.com