Dear Professionals,

When parents learn prenatally that their child has a diagnosis of down syndrome, they are often told the child's future is extremely grim.   Ninety percent of parents who learn the diagnosis of Down syndrome choose to terminate the pregnancy. The other 10% are likely to be pro-life, or they know someone with Down syndrome, or have researched the disorder abd are aware of the risks and decide to continue with the pregnancy.

When parents learn postnatally, it's usually because blood tests come back with false negatives, or the ultrasound did not reveal any soft markers. At delivery the parents are completely overwhelmed.

Most families go through a grieving period, because the child they dreamed of is not the child they are taking home. So, I’m sure you will understand when I tell you that giving the diagnosis is extremely difficult for parents to hear and should be handled very delicately. Please take a few minutes to watch the video provided.  It will give you some insights into giving the diagnosis to the parents and thank you so much for taking the time to research this for our families.

You can also help parents by giving them our F.R.I.E.N.D.S Parent Packet or connecting them with one of our Parent Liaisons.  We can deliver our F.R.I.E.N.D.S. Parent Packets to your hospital, doctor's office, or clinic. We also offer Hospital Outreach Lunch & Learns for new interns, nurses, and students to give a parent’s perspective on the challenges of raising a child with special needs. To request a packet or book a Lunch and Learn, call (813)245-2782.

With warmest regards,

Ann Foyt, R.N. - F.R.I.E.N.D.S. Executive Director

These recommendations are a thoughtful composite of the input of many experts involved in the care of people with Down syndrome. They reflect current standards and practices of health care in the United States of America.

They have been designed for a wide audience:

For health care professionals who are providing primary care, such as pediatricians, family physicians, internists, and geneticists, as well as specialists, nursing personnel and other allied health professionals, such as physical and occupational therapists, speech-language pathologists and audiologists. In addition to educators and early intervention providers, these guidelines are designed for parents and other caregivers to use with the professionals who participate in the care of the individual with Down syndrome.