1.17.2013

aiden's cleft

I know I'm weird.  I'm dedicating an entire blog post to my son's birth defect. 

Disclaimer:  This post is not for the squeemish.  If you consider yourself squeemish, click here instead.

I remember the day I first saw Aiden's cleft palate.  He was only a couple weeks old, probably less than 3 pounds.  He was intubated at the time and his mouth was so small that the breathing tube didn't allow for him to close it at all.  I caught a glimpse of the roof of his mouth and I saw a hole.   I thought to myself, "Hmm, that's weird.  Does he have a cleft palate?".  I quickly dismissed the notion, sure that if he did have a cleft, his doctors would've informed us.  I didn't even mention it to Seamus.

Fast forward 6 weeks or so, Aiden is still on a lot of oxygen support.  He is 9 weeks old and he hasn't ever been able to breathe on his own.  At all.  At this point there was a new neonatologist on his case.  Dr. Cho.  The first time we met her, she jumped right into Aiden's care and had a new "plan" to get him off oxygen.  She told us that she felt his cleft palate was allowing air to escape through the roof of his mouth, instead of going through his nose (he had prongs in his nose that were resposible for delivering the oxygen) and into his lungs.  She said she would tweak the machine a bit to benefit him more, and that he'd likely be weaned off oxygen in no time. 

Me & Seamus:  "Umm, what?"  "What cleft palate?"

Dumfounded, I tell you.

So yea.  No one told us about his cleft until he was 9 weeks old.  It likely slipped through the cracks because at 9 weeks in the NICU we were on doctor number 4, I think.  I bet each doctor thought the first one told us, and so on and so forth.  Honestly, at that point it didn't matter.  Didn't change things.

We were briefed on the surgeries that Aiden would need in the future.  The struggles he would likely face with speech and facial development.  Hearing loss.  All that good stuff.  To be quite honest, I knew nothing more about clefts than what I saw in magazines...you know those ads that ask you for donations so that a child in a third world country can have their cleft repaired?  Yea.  Naturally I was a bit in shock.  I never knew someone in real life with a cleft.  And I just figured that it wouldn't happen to us.  I had great prenatal care, took my vitamins & folic acid.  A birth defect?  My son?  No way! 

It was hard for me to look at for a while, I must admit.  The stigma that comes with birth defects in our society doesn't do anything to help a parent facing one cope.  I regret that I wasn't more educated about these things before and I'm ashamed of my initial feelings toward my son's cleft. 

I actually found a blog post written by a woman whose son had both a cleft lip and palate.  She wrote about her feelings after her son's initial surgery to repair his lip and she said she missed his wide smile.  My reaction to this was shock.  I thought, surely, she was glad to have his lip repaired.  Why would she miss his cleft?

Now I get it. 

Aiden's cleft is a part of who he is.  Who he's been from day one.  The reason his voice is raspy.  His cry is low.  And his laugh is gentle. 

I've looked in his mouth many times and seen the opening.  I often try to get him to laugh for various doctors so that they could get a look at it.  He even got a cube of cheese tuck in there once and my sister and I tried to figure out how to get it out without the risk of it coming out through his nose.  Yucky, I know.

Anyway, the reason for this post is that Aiden will have his cleft palate repaired in less than a month.  His voice and laugh are sure to change post-surgery.  I must remember to record him often from now until February 15th.  I never want to forget that little boy I first met way back when. 



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