I like the script you wrote.
PS When you tweet your posts, can you shorten the url? Makes for a better RT.

Part of my training – and I expect the training for most folks seeking ordination – was in Clinical Pastoral Education, or hospital chaplaincy. One of the lessons I have taken with me for all these years is that as chaplains we are not there only for the patients and their family. We are there also for the whole range of medical professionals. As a part of that presence we can help them deliver a difficult diagnsis. My hope is that the medical professionals know enough to ask a chaplain for guidance and assistance with this. It does not mean they will do it for them, but they will help coach the medical staff in talking humanely with the family and patient.
God is with us in our sorrow, our confusion, and when facing the tremendous unknown. Look for God’s presence in those challenging times and you will discover profound moments of love and joy.

I have “met” many parents online who, unfortunately, have had poor experiences with doctors’ deliveries of a Down syndrome diagnosis. My OB actually delivered the news with kindness and heart, and I will always be thankful for that. It was one of the most defining moments of my life thus far.

Physicians are often unaware of the impact of how they deliver a diagnosis and the words they choose for such an important conversation. Your recommendations were right on the money. The National Down Syndrome Congress has an online tutorial by physicians to help their colleagues with the delivery of a diagnosis (www.ndsccenter.org/physiciansguide/). We are also advertising in two OB/GYN professional publications trying to get the word out that people with Down syndrome are more like the rest of us, than they are different.
Thanks for your excellent post.
David Tolleson
NDSC Executive Director

I remember nothing about what my doc said except the words “chromosomal abnormality.” I think you’re right…the specific words are less important than the attitude behind them.
And doc’s (and hospitals) need to know how to handle a child with DS. That seems ridiculous to have to say, but our hospital and staff didn’t seem to know what was standard practice–echo, etc.–for a child with Down’s. Parents shouldn’t have to be battling when they’re bruised and bleeding. The best gift the medical staff can give is to ease them through the first few days.

Rereading that, I want to make sure I say that I adore my doc, and his part in the process could not have been better. We also had lots of good staff members…but some who were not, too.

Our son, Jeff had so many troubles in his first year that our dear pediatrician didn’t want to worry us more with her suspicion of Down syndrome. Jeff had this breathing noise and our parents insisted we see a specialist. An ENT (Ear, Nose, Throat) doctor examined Jeff, then asked, “Mr. and Mrs. Reisch, did you ever think that Jeff might be retarded?” That blew our minds, and when we finally stopped asking, “Why us, Lord?!?” and asked, “Where do we go from here?” then we could see the people around us who could help Jeff become all he was capable of being. I invite you to read Jeff’s story in “Journey With Jeff; Inspiration for Caregivers of People with Special Needs.” (This is available at Amazon.com) I wrote it so that no one needs to feel alone.

Amy Julia
An excellent, and succinct, response on how and what to say when delivering a diagnosis.
Last year, a group led by Dr. Skotko published articles on best practices for delivering a pre- and a post-natal diagnosis. These guidelines can be accessed at:
http://www.brianskotko.com/index.php?option=com_content&task=blogcategory&id=4&Itemid=7
Best,
Mark Leach
Chairman, Informed Decision Making Task Force
Down Syndrome Affiliates in Action

Mark, Thanks for drawing our attention to those guidelines. I’m going to edit the body of the post and include them. I too am very grateful for Dr. Skotko’s work!

Amy Julia,
Thanks for this post. There is another resource available called Brighter Tomorrows and it is an interactive website for ob/gyn to learn how to deliver a diagnosis of DS. It also includes information for parents who have just found out their baby’s diagnosis.
I really enjoy your blog. I have a nine yr. old son with DS.

My friend Eileen whose 11 year old daughter has Ds says, “the one thing a diagnosis of Down syndrome cannot tell you is the unspeakable joy your child will bring you”. Together we formed KIDS Keep Infants with Down Syndrome to call attention to the 90% abortion rate of children with Ds. This is such a tragedy.
Another thing I’d say is, there is good news from science for those who have Ds. Dr William Mobley said last year that he sees a medical cure for the cognitive delays of Down syndrome in only 10 years. He is moving forward to collaborate with other researchers in
a very important meeting this week at the Royal Society of Medicine in London.
Prof William Mobley / USA, Prof Michael Crawford / UK, Prof Jacqueline London / France, plus our brain researchers.
Discussing medicines and research to improve memory and brain function.
Check our website http://www.dsrf-uk.org for more information.
Dont forget to support this research – we are in this together – fighting for our children looking for that miracle. Its just around the corner.
Peter Elliott

There’s a really beautiful blog post I read by a mother whose daughter has DS. She describes how the pediatrician told her and her husband (she writes about how she knew the moment she first saw the baby). Here’s a link to the whole story: http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html
Here’s just the part about how the doctor told her. It’s really beautiful:
“I need to tell you something.”
…and I cried hard… “I know what you’re going to say.”
She smiled again and squeezed my hand a little tighter.
“The first thing I’m going to tell you is that your daughter is beautiful and perfect.”
…and I cried harder.
“…but there are some features that lead me to believe she may have Down Syndrome.”
Finally, someone said it.
I felt hot tears stream down and fall on my baby’s face. My beautiful, perfect daughter. I was scared to look up at Brett, so I didn’t. I just kissed her.
And then, Dr. Foley added…
“…but, Kelle….she is beautiful. and perfect.”

Kate–I love that story, and Kelle’s blog is gorgeous. Thanks for sharing it with us here. Amy Julia