When breaking the news to the family, you could start by saying: “Congratulations on the birth of your little girl/boy (use baby’s name). I have some information about (use baby’s name) that I need to share with you. It looks as though she/he may have Down syndrome. We’ll do some tests and let you know the results as soon as possible. Your baby is doing just great 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 getting information also helps. Would you like me to make contact with the local Down Syndrome Association for you? They can drop off or send some information and perhaps have a chat with you. The up-to-date information you receive from them can be very helpful”.
The difference between compassion and pity is that compassion is based on connection and pity on separateness. I imagine both the compassionate and pitying think: “Thank God that’s not me” the difference is that the compassionate person remembers that it just as easily could have been
BREAKING THE NEWS
As medical professionals the chances are very good that you will be the first person to utter the words ” Your baby has Down syndrome” This is not an easy task as those words will change the life of those parents forever. At first their hearts will be broken, they will probably feel as if their lives have shattered into a million little pieces and that nothing will ever be right again. Miraculously though they realize that their hearts are not broken just bruised, that their lives can be glued back together piece by piece and that even though their child has Down syndrome it is the end of the world as they knew it and the beginning of the world as it is now not worse just different.
What is remarkable is that the way the news was conveyed often leaves a bigger scar than the diagnosis itself, you want to make sure you get it right the first time, as your words will have lifelong impact. When those words are spoken – pre or post natal – that parents world falls apart and nothing can prepare a parent for this.
Some tips on how to tell parents about their child’s diagnosis of Down syndrome