For Doctors and Hospital Staff

If you are thinking that there is no good way to tell a parent that his or her child might have a disability, you are right.  There are ways that are terrible and wrong, there are ways that are better, and there are lots of ways in between.  As parents of children with Down syndrome, many of us would agree that there is nothing good about disability.  We love our children, not their diagnosis, and we are proud of their many abilities and individual qualities.  This web site will provide you with some insight into what we feel and have come to learn as we raise our children.  You will also find material that you can print and reproduce for new or expectant parents.   We have also included guidelines below, for better ways to approach the very difficult task of telling a  new or expectant parent that his or her child has or might have Down syndrome.  Finally, we have created a First Call program to assist you in communicating with the family.  (Click here to read about our First Call program). Please feel free to contact us at any time.

Remember that what is an uneasy moment for medical personnel, becomes a difficult memory that, for us as parents, lasts a lifetime.  You are in the unique position to help shape that memory.

Guidelines for giving new parents a suspected or confirmed diagnosis of Down syndrome:

Please note that these guidelines are easy to implement.

  1. When approaching a parent with the news, be sure that both parents are present if at all possible.
  2. The mother’s doctor, and not a maternity or NICU nurse or other physician, should speak with the parents first and as soon as possible.
  3. If immediate medical intervention is not needed, the baby should be present, with the parents, and referred to by name.
  4. Parents should be congratulated on the birth of their new baby and it should be explained that this baby will be more like them than different.
  5. The parents should be given time to slowly absorb the information, which should always be current and factual.  Projections of any sort should not be made.
  6. Accurate and recent printed information on Down syndrome should be made available to parents.
  7. The mother should be offered a private room.
  8. A social worker or grief counselor should visit the parents.
  9. Although they may not yet be ready, offer new parents the opportunity to speak to a parent of a child with Down syndrome.
  10. Upon discharge, supply parents with referrals to necessary specialists, to Early Intervention, and to local and/or national organizations.

This news is often shocking and traumatic to new parents.  They may shut down or go numb.  Allow them time to process what they are being told and understand that many parents go through several, if not all, of the stages of grieving.  With time, education and support we heal and rediscover the joys of having a new baby.

Dr. Brian Skotko Studies

For links to DS facts, healthcare guidelines and information on the Early Intervention program, please click here.