Sunday, November 6, 2011

Ignorance is Not Bliss, Just Ignorant

When I was pregnant with the Dancing Queen, my family kept the news of DQ's diagnosis a secret from another family member, pregnant with her first child.  Nobody wanted to worry the mom to be. She was so close to giving birth, the thought was it would be too much. And I was so lost in my own grief, that I didn't really care. I went along with it.

Four years in and I know that was wrong. We should not shield pregnant women. If they do not know the risks inherent in giving birth, how can they know what to look for? Moms and dads are the first line defense for their babies. They need information. They need to know what to look out for, especially since heart defects are so common, but not yet routinely screened.

I don't know why I started thinking about this today, but I did. Life is a miracle. Each day, I'm flummoxed by the thought that any of us can be alive at all because of the complexity involved. Any tools we can have to help us through are needed. Knowledge is the greatest tool available.  So, if you are pregnant or love someone who is, please let them know about CHD (read this link with tons of info), so they have as many tools as necessary to help their baby should they be one in a hundred.

After posting, I realized why I was thinking of this today. Today is the 4th anniversary of the day our life changed completely. Four years ago today, I had my follow-up ultrasound, where they diagnosed DQ at 20 weeks gestation with tetralogy of fallot and couldn't find her pulmonary artery. That was the first time they told me "we just have to wait for her pulmonary arteries to grow."

1 comment:

  1. You're so right. There is a reason for the cliche: knowledge is power.

    Isn't it weird how certain days are etched into our brains, so deeply, and though we don't immediately recognize why, our mind goes back.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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