Respect the Experts: Part Four

A Trauma Mama is Not A Drama Mama

I hope now with the first three parts (One, Two, and Three) of the Respect the Expert Series, that all readers understand that Critical Congenital Heart Defects (CCHD) are life-altering and life-threatening.  As many as 8,000 Americans die every year from Congenital Heart Disease/Defects, and most and the youngest ones typically die from CCHD.  That’s a lot of death and there is suspicion that many deaths in rural counties and areas without strong coroner services are missing CHD/CCHD deaths that would drive the numbers even higher.  Every year 40,000 new US babies are born with some form of CHD, and about half of those babies will have some form of heart surgery before they turn one.  While it may seem rare, it’s the most common birth defect and it impacts 1/100 people.  We are the other 1%.

Regarding today’s subtitle, let me just say it lacks both wisdom and empathy to tell any mother whose child has been near death or on a heart-lung machine that’s she’s overreacting, being “dramatic,” or hurting your feelings if she says that visitors are not welcome at the hospital or at home immediately before or after surgery.  Those are the most perfect circumstances for controlled and stringent action.  That’s not reaction, that’s prevention. That’s part of being in this particular 1%.

I have a friend whose father told her he couldn’t sit with her while her daughter had one of several open-heart surgeries because it was “too hard for him.”  I had another friend whose own mother told her, “You better prepare yourself for when that baby dies.” On the flip side, I have many friends who parent CCHD kids whose family members have told them the following or similar things:

You’re being a drama queen.Drama-icon

You just want attention.

Your kid isn’t any sicker than mine was when he had his tonsils out.

She’s going to be fine; you’re making a big deal out of nothing.

It’s not really life-threatening.

Stop being so dramatic.

It goes on, and on, and on.  You would think after ten years of it this stuff wouldn’t shock me anymore, but it still does.  What people don’t seem to understand is that while you’re in the hospital it’s not only dangerous but almost biologically impossible to be emotionally aware of what’s happening to your child.  It’s not unlike what happens the first few days after you lose someone close to you.  Your body produces chemicals that numb you so you can survive the effort of willing your own child to survive.   So, if weeks, months, or even years later, a parent wants to talk about what happened or how serious the child’s illness it, shutting them down is almost like telling them it never happened.  But it did happen, they were there.  The trauma is real, the drama is just the natural by-product of making life-or-death decisions and facing the ensuing situations.

Tomorrow I’m going to write about the social context of grief, but I wanted to demonstrate what “not to say,” before we move into why people say things like this.

Tell me what you think.

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