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 babys 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 breastfeeding 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
famiy, 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:
Congradulations on the birth of your little boy/girl (use
babys 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 recieve 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 PRACTITI0NERS
“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....”
What this space for medical health care guidelines and growth
chart as well as the medical checklist for persons with Down Syndrome coming
soon....
Call the office of 0861-DOWNSA (367692) if you would like it faxed
through to you.
