The 41 Baby Project: Duane's what??

I'm a 42yo online communications & IT consultant, and ex recording artist, from Melbourne, Australia.

After much searching, I finally met the right man. Then I got pregnant at 41 - baby boy was due 20 April 2010.

It was to be quite a journey. We discovered via ultrasound that our baby had some health problems, namely a hole in the heart, hypospadias and IUG growth issues.

Then I became very ill with pre-eclampsia, and was admitted to hospital at 34 weeks gestation.

Our baby Charles was delivered prematurely on 16th March 2010 weighing a tiny 1460g (3.5 pounds). He spent a month in hospital before coming home.

Duane's what??

So Baby Charles has Duane's Syndrome Type 1.

Yes, that was my reaction. Duane's what? I said.

It is an eye condition, whereby one eye is restricted in its movement. Charles' right eye does not move to the right.

You can read more about it here:

http://en.wikipedia.org/wiki/Duane%27s_syndrome

and see an animation of how it works here:

http://www.mrcophth.com/eyeclipartchua/duanesyndrome.html

(Charles is the top one - but he has it on the other eye)

What can we do? I said. Nothing, said the very kind paediatric opthalmologist we saw. There is no cure.

Am still absorbing what this means. The opthalmologist says Charles will learn to compensate for it, by adjusting his head, positioning himself in the room so he can see best, and so on. He will learn to hide it, she says.

I am distressed at the idea that my child has something that cannot be cured. I go home and weep. How many more knocks can we take?

But now I am simply determined not to let it affect Charles, or stop him from doing anything he wants to do.

2 comments...:

Mayet said...: be brave for him! this isn't going to be easy but at least you are there for him!

take care!; 25/11/10 12:09 AM
sevencherubs said...: just found your blog - love your heart felt words and honest thoughts - what a blessing tears are for mothers and I hope that things are not as bad as it feels like for you. my thoughts and prayers are with you. Naomi x; 29/12/10 8:47 PM

The 41 Baby Project

Duane's what??

2 comments...:

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