Telling Parents Their Unborn Child has Down Syndrome

Rick Smith, the father of a two year old son with Down Syndrome, who blogs about him as “Noah’s Dad,” has published an open letter on his blog entitled:

To Every OB/GYN On The Planet: How To Deliver A Down Syndrome Diagnosis,The Right Way.

It is a thoughtful and powerful message, delivered patiently and with love.   Since I have written about Down Syndrome before, I wanted to share this with everyone.   Getting the news about your child, whether in utero or after he/she is born can be very hard, and the doctor can make all the difference.  In our case the news came hard because our OB/GYN’s partner ordered a post-natal genetic screening without telling us, so when my wife went in for a well-baby visit she (the OB/GYN) told her the results thinking we knew her partner was concerned.

At the time we heard horror stories from other parents about doctors saying all sorts of incorrect and hurtful things; or doctors who punted and made the nurse on duty tell the parents.    More recently, a priest friend told about a seminarian who was working in the chaplain’s office at the local hospital.  He got a call asking him to accompany a doctor to see a patient.  Without warning him beforehand, the doctor broke the news to the parents, turned to the seminarian and said, “He’s here to help you with your grief,” and walked out.  So this letter needs to be read by nurses, priests, deacons and anyone who does hospital ministry as well.

Here are Mr. Smith’s five key points:

1. Say Congratulations, not I’m Sorry.
2. Keep a positive (professional) demeanor.
3. Tell them there has never been a better time in the history of the world for a child to be born with Down Syndrome.
4. Let them know you’d be happy to connect them with another family raising a child with Down Syndrome who can answer their questions and give them a window into what life is like raising a child with Down Syndrome.
5.  

   Don’t Suggest That The Parents “Terminate The Pregnancy” Because The Child Has Down Syndrome.

Since 92% of children diagnosed in the womb with Down Syndrome are aborted, I want to reinforce his last point by quoting him at length:

I can’t tell you how many times I’ve been told by another parent of a child with Down syndrome that their Doctor continually suggested (to the point that they felt pressured) that they “terminate their pregnancy.” This suggestion goes against the Hippocratic Oath which you swore to abide to. It ‘s not a wise use of your power and influence, and does not serve the highest interest of your patients; either the baby in the womb who is your patient and whom you are suggesting to their parents that they murder (abort / terminate) him or her, or the mother who is also your patient whom you are suggesting murder their child and live with the guilt and regret of their choice for the rest of their life.

As I’ve already mentioned, as a Doctor you have a tremendous amount of influence with your patients, and they are looking to you with trust for guidance, hope, and encouragement. Regardless of what your views are on abortion, and rather or not you are “pro-life” or “pro-choice,‘ (I’m fully, 100%, always for life by the way) I’m sure we can agree on the fact that selectively aborting a child based solely on the fact that they have three copies of their 21st chromosome as opposed to two is wrong. In fact, some states have even made it illegal to abort a child due to a genetic abnormality.

So please don’t plant the seed of abortion in your patients mind simply because there’s a chance their child is going to be born with Down syndrome. Instead, plant seeds of hope, encouragement…and life.

The only thing I can add is a picture of my son Nicolas taken at his new training site:  doing filing and data entry for a state agency, a future we simply could not imagine as we held him in our arms 21 years ago.