The invisible disease

By Rebecca, Primary ciliary dyskinesia, Australia, December 15, 2018

Rebecca

At 24 weeks pregnant we discovered our baby boy had Situs Inversus Totalis, meaning he had reverse positioning of his heart and some organs.  Apparently you can go all through out your life not knowing your heart is on the other side! How amazing!

In July 2018 Little W was born however 24 hours later he went into respitory distress.  The doctors suspected Primary Ciliary Dyskinesia, where the little cillia in his body do not function.  This causes recurrent, chronic infections in the lungs, sinus and ears.  

Little W is only 4.5 months old and we have a long road ahead as we still do not understand the severity of his condition.  He does suffer from daily congestion on his chest and with his sinuses.  The treatment for him is nebulising and physio which he is not a fan of at all. 

His condition has taken a toll on myself and husband but we are recovering well and trying to enjoy our little boy and not focus too much on his condition.

More of our story is located here https://williamsjourney.home.blog/

If you have a moment we would love for you to ready our journey so far.  

 

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