Raising awareness for Pierre Robin Sequence

It’s been a while since I talked about anything other than staying in the hospital. We’ve been pretty busy, especially with the complications that have arisen from Namine’s heart surgery and all that entails.

The last time I talked about Pierre Robin sequence related stuff was when Namine had her omega loops placed. Of course, we’ve since had to cancel her appointment to finally get the prosthetic (the name for which I still do not know) fitted in her mouth; we’ll get around to rescheduling that when Namine is finally released from the hospital.

But all that is yet to come. Right now I want to draw your attention to Pierre Robin Sequence Foundation, whose existence I only recently discovered. Or rather, they discovered a post of mine of Twitter, which led me to their website.

I’ve talked about PRS quite a bit before, as it was just as life-threatening as Namine’s heart defect. More, in fact: it was her airway that needed immediate attention when she was born; her heart didn’t require surgical intervention until two weeks after her birth.

It was a long road to get Namine where she is now. She had the trach placed very early on, of course, and it was terrifying for Jessica and myself, especially being new parents, not to mention new to special medical care. Especially daunting was the prospect of bringing her home for the first time.

But bring her home we did – how could we not? – and took care of her to the best of our ability. Over the course of 2009 and 2010, Namine had a jaw distraction, cleft palate repair, and finally, the trach removal. We have had amazing doctors and great care here in the hospital. We wouldn’t be where we are today without them.

One response

  1. Thank you for educating me about this rare disease.

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