HOW TO BREAK THE NEWS TO PARENTS WHEN DS BABY BORN
“Before I could even see or hold my baby, the doctor looked at us and told us our daughter had Down syndrome. She quickly left the room and my husband was forced to tell the rest of our waiting family. We were overwhelmed…”“…We were overwhelmed by all the negative messages the doctors and nurses gave us. They made it seem like Down syndrome was a horrible thing.”Talk to the families promptly!

Families want to hear such concerns from a doctor they are familiar with as soon as possible after suspecting the diagnosis.

• Before talking with the family, make sure that the mother has support

in the room (spouse, significant other or family).

• Be seated when talking with the family.

• Encourage the mother and/or father to hold the baby while talking.

• Address the newborn by his or her name… never as a Down’s baby.

• Allow time to discuss your concerns and hear theirs.

• Most families will want some written information on Down syndrome and

local resources such as support groups.

• Families want to hear only the present concerns. Do not forecast the

child’s future (e.g. child will never play sports, finish school, etc.).

How to share the news that a baby has

Down Syndrome

A simple narrative to help startyour conversation…

“Hello, Mr. & Mrs. Smith…Congratulations on your new baby. Have you chosen a name for your daughter? Jasmine! Jasmine is a lovely name.Jasmine is the reason I asked to speak with both of you. Please take a seat. You may have noticed that Pooja has some distinctive facial characteristics.

The nurses and I have also noticed this and based on these concerns, we feel that Pooja may have Down syndrome. We are not sure at this time, but let me tell you a little about Down syndrome and what we plan to do for Pooja…”

Why is this important?

The words that you choose to deliver the diagnosis to a new family will echo in their minds forever, so it is very important to choose your words thoughtfully. Parents need to know that although this is a difficult time, no one knows what the future holds for any newborn baby. They should maintain high expectations for this baby just as they would for any child. This child is a baby first and the birth should be cause for celebration.

Leave the family with concrete plans as to how to proceed from this point. These plans should include the following:

Confirming a Diagnosis

• Chromosomal study: Consider an evaluation by a

clinical geneticist.Evaluations Needed Now or in the Near Future

• Echocardiogram

Follow-up Plan

• Home nurse visitation

• Breastfeeding support if needed

• Early weight checks

• Clinical genetics evaluation

• Cardiology evaluation

• Support group

Most importantly, let the parents know who to call with

questions and concerns.