How could my son's birth be 'wrong?'

They are words that will be seared in your memory – as fresh and raw as the day you first heard them.

When you learn your newborn has a disability or health problem, the words a doctor uses to share the news can build you up or tear you down.

"He has anti-mongoloid eyes, low-set ears and a bit of a hare lip," the doctor told us. He was obviously annoyed at being called out at that time of night and he didn’t like what he saw.

Ben – the sacred being that had grown in my body like a new limb – lay naked under the stark, fluorescent light. The doctor had unswaddled him and was inspecting him, piece by piece.

I hadn’t noticed anything unusual about Ben’s eyes. I had always loved the metaphor of the eyes being windows to the soul. I knew that mongoloid was an archaic term for Down syndrome. What on earth did ‘anti-mongoloid eyes’ mean?

“In Down syndrome, the eyes slant up,” he said. “Your son’s eyes slant down.”

He said our son had "something like a cleft palate," shook his head and muttered: "the timing wasn't right."

How could my son’s birth be wrong? My jubilation – a brilliant, burning fire – was now flickering in the wind of a competing grief.

The doctor said these were soft signs for mental retardation, though he didn't know what he was dealing with.

Sensing our mounting anxiety, he made an attempt at a joke. "Did you hear the story about the doctor who comes to examine a newborn, sees the baby's mongoloid eyes and tells the mother that the baby has Down syndrome? Then the father comes into the room and the doctor realizes he's Chinese – ha, ha, ha!”

My boy was only an hour old.
Research shows that mothers remember the first words a doctor uses to describe a baby’s disability or medical condition – and the way it’s communicated – decades later.

How did your physician communicate the news?

An article published in the journal Pediatrics last week provides guidelines on how doctors should deliver a diagnosis of Down syndrome, based on a literature review of best practices.

I think the guidelines are relevant to any newborn diagnosis.

They include that obstetricians and pediatricians jointly deliver the news, in a private setting, with both parents together, and provide accurate, up-to-date information. That includes reading resources and local support group contacts.

Most important, the researchers recommend that doctors:

-Begin the conversation with positive words, such as congratulating the parents on the birth of their child (this may sound like common-sense, but we didn’t hear the word congratulations from a health professional for days. Instead, they darted in and out with their eyes down).

-Use nonjudgmental language, avoiding words that convey pity (“I’m so sorry”) and tragedy (“Unfortunately, I have some bad news” or “I know this might seem like a devastating loss.”). It’s “unnecessary and not always reflective of mothers’ emotional states,” the researchers say. Further, conversations should not involve unsolicited personal opinions.

The article notes that in a 2007 survey of 2,500 medical school deans, students and residency directors, 81 per cent of medical students report they don’t get clinical training about people with intellectual disabilities and 58 per cent of deans say such training is not a high priority.

No wonder sharing this kind of diagnosis with sensitivity is so challenging.

Dr. Brian Skotko, a clinical fellow in genetics at Children’s Hospital Boston, led the 29-member team of health professionals that came up with the recommendations. Dr. Skotko’s research focuses on children with developmental disabilities. He’s co-authored two books related to families of children with Down syndrome and has a sister, Kristen, with Down syndrome. He writes about the study in an article called How to give a diagnosis of Down syndrome.