When I found out I was pregnant in May 2012, I was elated. Surrounded by friends who were starting families, I was thrilled I would finally have a baby of my own. Then, at my first scan, the doctors discovered that my son had a genetic disorder. At 21 weeks, he died of osteogenesis imperfecta type 2 – the only fatal form of brittle bone disease.

I was inconsolable. When friends and family tried to comfort me, I was either too numb to listen or just couldn’t bear to hear their well-meaning, yet sometimes inappropriate, comments.

“We don’t have a language in this culture to help us with this loss,” says Monique Caissie, the facilitator for Healing Together, a support group for bereaved mothers in the West Island. “If a man loses his wife, he’s a widower. If a person loses their parents, they’re orphans. We don’t have a name for when we lose a baby. It’s just too horrifying a thought.”

People who haven’t lost a child don’t understand that nothing you say will make a grieving parent feel better. Grief counselor Dawn Cruchet says people mean well and hope to ease the hurt – but sometimes their comments can unwittingly make things worse.

“They make painful comments like: ‘Aren’t you glad you didn’t know the baby?’, ‘It’s okay, you can have another one,’ and ‘He/she’s in a better place’,” she says. “I think people need to know you can’t fix it, so don’t even try. You never get over it. You don’t get over love.”

Pregnancy loss is more common than most people realize: an estimated 25 per cent of all pregnancies end in miscarriage, stillbirth, or other conditions such as a genetic disease or an incompetent cervix, according to the Centre for Reproductive Loss. About 95 per cent of these deaths are inexplicable. The babies just die.

Jenn, 31, who asked not to have her last name published, lost twin girls at 21 weeks due to an incompetent cervix. It’s a condition discovered during pregnancy that causes the cervix to dilate without feeling contractions, leading to premature birth and fetal exposure to infection. Sometimes the babies can be saved, but not in Jenn’s case.

People tried to comfort her by saying her daughters were better off. Because infant death is a taboo topic, many people assume an unsuccessful pregnancy is simply a miscarriage due to a sick baby. “No!” said Jenn, “My body failed me. My babies were 100 per cent perfect. I may have others, but they will never replace my first two daughters.”

Geneviève Gosselin, 28, a marketing analyst who suffered two miscarriages, says she understands how people can be at a loss for words. “If I put myself in their shoes, I’m not sure how I would have reacted not having gone through it in the first place.” What helped her most, she says, was someone simply asking how she was doing. “Even though the person knew I wasn’t doing well, it felt like I was being cared for.”

In many cases, actions speak louder than words. Tell the person, ‘I’m going shopping, give me a list of what you need,’ Cruchet suggests. Or bring over food.  “Don’t ask. Just do.” she adds.

Caissie says the first step to healing is to tell your story, and it’s important to give parents the space to do so. Cruchet says healing begins second by second, then minute by minute, day by day and so on.

In my own grief, I drew comfort from pottery. After experiencing something so devastatingly out of control, being able to mould clay helped restore a small sense of order to my life. Healing happens gradually, and over time, the pain of losing a child becomes less sharp. The grief transforms, and becomes a new normal. And eventually, we may surprise ourselves when our first genuine belly laugh isn’t accompanied by feelings of guilt because we’ve experienced joy.

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Know someone who’s lost a child?

What not to say:

• You’re young, you can try again.
• I guess heaven needed another angel.
• He’s in a better place now.
• Aren’t you glad you don’t have to change diapers?
• You should talk to my sister/cousin/aunt, they also had a miscarriage.
• There was probably something wrong with the baby.
• Be glad you didn’t know the baby.
• It wasn’t meant to be.
• I know how you feel.
• Will you have another one?
• The next one will be the right one.

What you should do and say:

• Do acknowledge the baby and the loss.
• Tell the person “I’m thinking about you today.”
• Remember important dates (anniversaries, expected due dates, etc.).
• Ask questions like: How are you feeling today? Do you want to talk about it?
• Don’t hesitate to say, “I don’t know what to say.”
  

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Montreal resources

Compassionate Friends is for bereaved parents who lost a child at any age, from pregnancy loss and stillbirths to accidents and medical issues. For information, call (450) 458-3164, or visit www.compassionatefriends.org.

Healing Together is a monthly support group for women dealing with a miscarriage or death of an infant. For information, call (514) 781-8529.

M.I.S.S. Foundation Montreal is a support group for parents who have suffered the loss of a child. For information, call (514) 489-4121.

Dawn Cruchet is a certified grief educator and counselor. For more information, call (514) 781-8529. www.dawncruchet.com