August 19, 2013

A rock and a (regulatory) hard place.*

Watching the state of science over the past 4 years has been simultaneously hope inspiring and heart breaking. Two years ago, I reported that autologous stem cells were being used to cure human corneal blindness. Since then, hundreds of people in India and pockets around the world have benefited from the technique to use a patient's own adult stem cells to successfully cure corneal blindness without risk of rejection! But, this surgery is not available in the United States. It won't even be in clinical trial for a number of years.

Dr. Graziella Pellegrini (interviewed above) developed the stem cell transplantation technique as reported in the New England Journal of Medicine.  

You can probably hear the gnashing of my teeth from wherever you are reading this.

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*This is a previously unpublished post from May 2012.  At that time, two ophthalmologists recommended that Bertrand undergo surgery to help with corneal scarring.  This surgery, tarsorrhaphy, is disfiguring.  The eyelids are partially sewn together to narrow the eye opening, thus reducing corneal exposure.

Dear Ryan was among the first google results for tarsorrhaphy.
I was heartbroken. The state of medical science left me in despair.  Bertrand deserved better and I knew it existed, but it was not yet approved in this country.

Due to corneal scarring, Bertrand has reduced corneal sensation and doesn't blink.  If his corneal sensation were restored, we are confident he would be able to blink and retain sufficient moisture on his own.

Unfortunately, a corneal transplant isn't a realistic option until after he reaches adulthood, as children have a ridiculously high rate of corneal transplant rejection.

Yes, we considered taking him to India for the autologous stem cell surgery.

But, short of that, we begged Bertrand's doctors to give us a shot at fighting the corneal erosion.


They did.  ...and it worked.

Today, August 19, 2013, at Bertrand's ophthalmology appointment, the scar on his left eye is no longer visible, and the scar in his right eye is significantly reduced.

Bertrand no longer has to see the doctor every 3 months--just every 6 months.

This miracle of sight is thanks to lotemax (steroid) ointment 3 times a week, systane ointment or refresh drops every 2 hours (minimum), humidifiers, and last, but not least, julbo sunglasses, which reduce ocular surface evaporation and look awesome at the same time.

It's long past time I should publish this, and celebrate.  :)

9 comments :

  1. Wonderful article about corneal scarring! In Ryan's case, his was caused by "exposure" resulting from an eyes-open coma. Prior to this surgery we were constantly battling infections. He required eye drops every two hours, around the clock.

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    1. Ken, thank you so much for your comment and for writing about Ryan's tarsorrhaphy (among the many other difficult topics that you address with grace on Ryan's blog). When we were exploring the surgery for Bertrand, there was very little information on the human side of tarsorrhaphy on the web. Your blog was *extremely* informative in that it included the reasons behind undertaking the surgery, the difficulties after the surgery (we were told there would be practically none!), and the results. Your words helped us to make a more informed decision for Bertrand's care, and gave us more things to try before undertaking the surgery. And, they worked! Words can't say how much we thank you and Ryan for helping our little boy. :) Please give Ryan a big hug from all of us!

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  2. :-) Such wonderful news! <3

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  3. best news EVER!! love you guys!!

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  4. 1. I'm so sad I missed you at Now I Can. How did we not cross paths? It's my fault. Things were hectic, busy, and I wasn't there regularly. I'm sad I missed you.

    2. Yay!!! Bravo to you guys for being so diligent! I'm so so so excited to hear this. Miracles happen, but often WE need to put our foot forward to initiate the action necessary for miracles to occur. Amazing. I'm so excited. So happy!

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    1. Jenny, things were incredibly hectic this summer for us too. I didn't get to see my other friend Ashley at Now I Can either! I am sad I didn't get to kiss Micah's sweet cheeks or give Cali a hug, but I'm sure Sammy passed the love along for me. :) Next time, we'll make time!

      Thank you for the cheers and well wishes. :) Here's to more miracles for all our kids! xo

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