Wednesday, September 5, 2012

Just a Tiny Bit of Cleft Awareness

I'm not much of an awareness person.  I don't wear coloured ribbons and really don't believe that sharing an image on Facebook is going to cure cancer.  Or anything else for that matter.

But there are some things that can and should be passed around.  There is information out there that could prove very helpful to mothers preparing for the arrival of a new baby, or facing an unexpected diagnosis.  I wish more awareness campaigns would focus more on getting actual information out there and less on using guilt to make people hand over money.

It being Craniofacial Acceptance Month, I have decided that although I don't believe awareness will in any way help children born with clefts like my son, it might help a few parents to deal with the news and people deal with those parents.  So here is my own contribution to said awareness.

10 Things To Know About Clefts.

1. My son was born with a cleft lip and palate.  That's palate, not palette, he is not an interior designer with space issues.  It means that his lip and the roof of his mouth did not fuse properly in the womb.

2. Clefts are among the most common birth "defects" around the world, and yet almost no one seems to know it.  Approximately 1 in 700 births involve a cleft of some kind.

3. I hate the word birth defect.  My son is not defective, thank you.

4. The cause of most clefts is unknown.  I did not drink, shoot heroin, or sniff glue during my pregnancy.  While some clefts are hereditary, they often come out of nowhere as a surprise to the parents.  Most of the pregnancies were totally normal.

5. "Hare lip" is an antiquated and very offensive term for a cleft.  Please do not use it.

6. Cleft repair is an ongoing process involving multiple surgeries starting in infancy and long-term treatment by a team of specialists.  It's not something that ends once it's "fixed".

7. Children with repaired (or unrepaired) clefts may have trouble hearing or speaking.  That doesn't mean there is anything wrong with their brain function.

8. Children with cleft palates usually can not breastfeed because they can't make suction.  They need to be fed with special bottles that work on compression.   Breastfeeding such a child is a long and difficult process involving a lot of quality time spent with a pump.

9. It's ok to ask questions about the cleft.  Parents don't mind talking about it.  We know it's visible.  We'd rather you ask than pretend you didn't notice and try not to make eye contact.

10. Please don't ever tell a mother who has just been told her baby has a cleft how it "could have been worse".  We know it could have been worse.  We know there are a thousand scarier diagnoses.  We are grateful that, unless the cleft is associated with a syndrome, our child is going to live and has a future.  But imagine how you would feel being told that beautiful baby face you were dreaming of when you saw that positive pregnancy test all those months ago has a hole in it.  Yes, it could be worse, but right in that moment, it still feels awful.



That's all.  I hope you are all feeling much more aware now.  Carry on.




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