Tuesday, October 6, 2009

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.


We were very fortunate to have an exceptionally qualified and KIND neurologist, who very gently but firmly told us the news, and how he would help us. I wish the same could be said about other health professionals and even family/friends, but I think the bottom line is that unless you are willing to open your heart to the situations we as parents of special needs children find ourselves in, you can never develop the empathy required to manage it, much less develop an effective communication plan.

What a doozy! I have whole short chapters in the book I'm writing about things various doctors have said over the years. As for the diagnosis, I've written a whole chapter about that, so stunningly incompetent and insensitive was the communication. There is a part of me, though, that realizes there is probably no perfect way to communicate this sort of news -- even when I read the protocol that you described, I cringe. It's sort of an impossible thing for most people to dole out and to accept.

Hi Julie -- How wonderful to hear about your neurologist and his informed and kind approach. You're right, there is no perfect way to communicate this kind of news!

I had a discussion with another mom recently and we were talking about the differences in receiving a diagnosis at birth, vs. when your child is a year or two older, and they each have their own particular aches.

I do think that some training in med school where students have the opportunity to hear parents describe their experiences and what they might have found helpful -- or simulations of giving the news -- could be helpful. I also recognize that each person responds to things in a different way -- what may be helpful for one parent may not be for another.

We did have the polar opposite of the first doctor in a pediatrician we saw when Ben was only a couple of days old. I wrote a story about him a while back which I can't find. I need to search because I would love to share what it was about him that "gave us our son back," in a way, while still conveying that he thought he had a syndrome.

Look forward to hearing more about your wonderful boy! Cheers, Louise

Hi Elizabeth -- Great to hear from you! What is the book you are writing? Is it a memoir? I'd love to hear more. Perhaps we can share a chapter as a guest blog.

I agree that it's challenging to be prescriptive about how to convey such sensitive and overwhelming information. For example, when I read the guidelines for what not to say, I wouldn't have interpreted the words "I'm sorry" from the doctor in a negative way -- to me that would have just been a way for the doctor to express his compassion for what we were going through.

I do think med students can benefit from education about, and interaction with, people with disabilities, simulation exercises and self-reflection (I'm sure there isn't much time for that in med school!)

That said, I think the life experience of a particular doctor probably has a lot to do with their ability to provide the medical information in an accurate way without stripping the parents of all hope.

Thanks for writing! Louise

I appreciate hearing the advice for medical personnel to congratulate the parents on the new arrival. I am not a doctor, but as a friend, I must admit that in my awkward attempt at showing compassion for a friend going through this, I know I have forgotten to pass on those good wishes. Instead, feeling like I shouldn't be avoiding the giant elephant in the room. I will definitely remember this in future.

As a parent who has received the diagnosis of autism for her twins at 2 years old, it was just as cold, and very heart-breaking. My boys were diagnosed a week apart and I think that the doctors assumed we must have already known; that the news would not be a shock. So it was delivered rather haphazardly. I have never felt so shell-shocked. I always try to remember that it is difficult news to receive, as well as to deliver it.

Louise how amazing for you to open your heart and life with us. I am not a parent of a disabled child but I also appreciate the feedback as I move forward with other friends and relatives. I know that I have personally received information regarding serious health information for myself as well as friends and family. I think it would help to have a few minutes preparation or for the doctor to say we have some unexpected information that we need to share with you before they just blurt out the diagnosis. I agree Louise being seated in a private room in a comfortable arm chair with soft lighting)so you can hold yourself up when you feeling like falling down would be better than a cold office or examining room too. I think the experience will forever be etched in your soul however your heart rate will have been a little more stable through the experience. Therefore you will leave with that much more strength and hope that you are able to face a new day!

WOW - finally research that proves what I knew all along - that the doctor had a hugely negative impact on my and my family due to his insensitive first words.

This is what I heard when my sone was 1 day old - 'he has deformed legs and feet and likely brain dammage. Dont ever expect him to sit, stand, walk, crawl, control his bowel, bladder or penis. Go home and retrofit your house'

There were no more words as he had other patients to see and quickly excited.

The positive words came many years later from a physiotherapist who worked solely with children struggling to walk and from the most fabulous teachers and support staff at the Bloorview School.

Hi Katharine -- it's so good to hear from you!

If professionals only knew the power they had to empower parents in providing a diagnosis -- which doesn't mean glossing over what the diagnosis is, but using neutral language and focusing on the fact that this is a precious child!

It sounds like the doctor you saw was determined to extinguish every hope you had for your son.

We were lucky to meet a doctor who had a VERY different approach when Ben was 3 days old -- you can read about it in a follow-up blog at

Hope to see you guys soon -- thanks for writing! Louise

I feel very blessed to have wonderful (yet bittersweet) memories of when my beloved OB told me of Benjamin's DS about an hour after his birth. I was surrounded by love in the hospital those first few days, and it really made all the difference.

My experience is different. As a parent of two "normal" children I have not had to live through an insensitive delivery of bad news. However, my first birth - with a midwife and then later at the hospital with an emergency c-section - was traumatic and frightening. I always dreamed of a loving, gentle birth story but tired, cranky, insensitive nurses and midwives got in the way.

Hi Angela -- How wonderful to hear that you had such a positive experience. It is possible to deliver a diagnosis, I believe, in a way that supports parents and maintains their hope and confidence to be able to handle the situation. Thanks for writing! Louise

Anonymous – I’m sorry to hear about your experiences. The philosophy and approach of midwifery is supposed to be different! :( Thanks for writing, Louise

When a healthcare professional is harsh, it can knock you down further than their kind words can build you up. We have been fortunate to work with a lot of very kind doctors and nurses (many of whom are Louise's co-workers at Bloorview). But the one or two times that a doctor or nurse has said something without considering our feelings, it has really been hard to deal with. I am happy that your negative experience was followed so closely by a positive one (on your next blog entry).

Midwife, to her assistant: Look at his hands.

Heaviness. They know something they are not telling me.

Later, midwife in accusing voice, to me, alone in the room except for my tiny 5-pound newborn son who is too tired to nurse: You already knew this. You told me.

Me, suddenly very very alone as the world dropped out from under me and my tiny perfect son-with-Down-syndrome: WTF? I knew??

Karen -- thank you for visiting BLOOM!

It saddens me to hear about the horrible experience you had with your midwife and her reaction to your son's Down syndrome.

I look forward to hearing more about your son!