9 Ways Medical Staff Can Support Families After a Down Syndrome Diagnosis

After a healthy pregnancy, I wasn’t expecting my son to have a diagnosis of Down syndrome. I also hadn’t planned that my baby would need to be transferred to another hospital for intestinal surgery at 2 days old.  And finally I didn’t expect the recovery to take a month and a half. Those days at
the hospital were traumatic. I’m thankful to all the medical staff, but I also have some words of advice.

Dear Medical Staff,

Thank you for all you did for our family, from the unexpected emergency C-section to the time my son was finally released to go home. I know you spend long days and many hours with all the families. I do appreciate your work.

I’m sure there is never a good way to break the news of a Down syndrome diagnosis. It would be especially hard to tell someone who was expecting a typical baby. Here are a few suggestions to improve your approach:

1.  Do not say your diagnosis suspicions to the mother while she is still on the operating table. Yes, the diagnosis needs to be known. But at minimum, wait until she is completely sewn up from the surgery — and preferably give her some time to bond with the baby first.

2. Do not tell the mother the diagnosis news if she is alone or if her family has left the room.
Wait until her support system is in place. Likewise, do not leave the mother alone in a room crying  after you have shared this information.

3. Consider waiting to reveal the diagnosis until a Down syndrome support group member can be notified and present to provide answers to the many questions the family will have.

4. My conversation occurred while I was on the operating table.  Some woman who I had never seen came up to me and said “Do you speak English or Spanish?” and then went on to reveal her Down syndrome suspicions, without ever introducing herself or revealing her position. Take the time to review the medical file of the family before you give diagnosis news. Find out the family’s native language and use the family members’ names as well as your own.

5. Tell the family “Congratulations.” After all, a new life has just been born!

6. Be sure to tell the mom the time of birth, the weight and length just like you do for all babies. If possible, get a birth picture as well. Families of kids with medical conditions want all this information just like you provide it for typical babies. I kept thinking I was missing out on so many experiences. Try to make the experience as close as possible to the birth of any other baby.

7. Do your best to explain your procedures and rationale. I wasn’t allowed to hold my baby for several hours after his delivery. I’m sure there were medical reasons for this, but I’m still unclear what they were.

8. Do not use “medical jargon.” After I had my son George, there was talk of taking him to the “Nick-que.” It sounded like a fancy French place. Later I realized “Nick-que” was actually an acronym, NICU as in Neonatal Intensive Care Unit. My baby needs to be in Intensive Care? Why didn’t anyone tell me that? The mother who has recently heard the diagnosis is likely in shock and possibly still recovering from medications, so the clearer you can be, the better.

9. Communicate honestly and with accurate terminology. I was repeatedly told my son would be
transferred to “Thomas.” I had never heard of a hospital or medical facility called “Thomas.” But who was I to argue? Only later did I realize “Thomas” was slang for the children’s hospital that was located on Thomas Road.

Again, I thank you for the excellent care you provided to me and to my baby. By the way, he is 10
years old now and doing just great! Thanks for considering this advice for the future.