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Friday, June 05, 2015

Kaitlyn and her vocal cord Reinnveration surgery

Sorry I so rarely post anymore, but for those Micro Moms out there, this was too important not to post:

As many know Kaitlyn's left vocal cord was paralyzed after her PDA heart surgery saved life (at 4 days old).  But a consequence of this surgery (for many) is left vocal cord paralysis (Not only making her have a VERY quiet voice (as an infant she didn't have a cry, it was silent) and also caused her to have severe feeding issues and she didn't eat orally  until she was 4 years old as she was 100% tube fed). 

There is a surgery to help with this!! it's called  Vocal Nerve Reinnervation.  or more technically  laryngeal reinnervation (LR) as treatments for unilateral vocal fold paralysis (UVFP).


After doing a lot of reserach I discovered that this surgery shoudl be done as soon as possible after the injury (or in this case the PDA ligation which caused the paralsis of the nerve)  Unfortatenly, I didn't learn of the surgery until Kaitlyn was 8 years old.  We wanted the "best" docotor to do this surgery so we flew to Utah to see Dr Marshall Smith at University of Children's Hosptial.  It took many months of work to get my insurnace to approve an out of state proedure. But persistance paid off and we finally went for an evaluation and the surgery in April 2014. 



Here are some studies articles from Dr Smith:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3183158/

http://healthcare.utah.edu/publicaffairs/news/archive/2011/10-06-11_Vocal%20Fold%20Paralysis%20.php

 http://www.ksl.com/?sid=20601197

from the KSL story  on KSL.com:  "The surgery paralyzed the right side of Burnett's vocal folds. He had to undergo surgery and therapy at the Center to strengthen the left side of his vocal cord. "It was paralyzed in the open position," Burnett said. "Now the surgeries that Dr. Smith performed allow the left vocal cord to vibrate off the right one." 

This is the surgery Kaitlyn had :  from the same article:
"Currently, doctors at the University of Utah Voice Disorders Center are trying new techniques to better heal voice disorders — a surgical procedure that may be available to restore tone to the paralyzed vocal cord.  "We graft in a nerve from another nerve in the neck to the paralyzed nerve to give it more tone," said Smith. "And that procedure is giving good results."

Some pre surgery pictures in Utah:




 Here is a video from this visit, pre surgery so you can hear her quiet voice:

 
 A post surgery picture (so you can see the small surgery bandage)


The surgery itself took over 3 hours, but it was just an overnight hospital stay.   She had her adenoids removed at the same time (hoping that might cut down on the many colds she catches)  that was likely a harder recovery than the reinnervation surgery was.  There was very little pain post surgery, nothing more than Advil cloud handle for a few days.  We flew home 2 days later, Dr Smith just wanted to make sure there were no complications (there weren't)

 Dr Smith told us we wouldn't really hear any difference until approx 3 months post surgery.  and he was right!  We didn't hear any difference whatsoever, which was a bit disappointing, I guess we had such high hopes we'd notice something.  But then one day, we noticed something. All of a sudden her voice got louder (we looked at a calendar and it was literally 3 months post surgery).  From then on over the next 9 months, her voice continued to get louder.  She was rarely asked any more "what's wrong with your voice"  "why is your voice so quiet?"  "why are you whispering"  And my dad, (who is a bid  hard of hearing) said he could hear her for the VERY FIRST TIME!  When I told that to Dr Smith he told me tears came to his eyes!

 Here is a post surgery video 13 months after:



I'm so sad I never took a picture with Kaitlyn and Dr Smith.  . 

We are so so so very thankful to Dr. Smith and his entire team that helped take such good care of Kaitlyn and gave her so very much.  I can't stress enough how much this has literally changed her life.  Kaitlyn loves performing and takes plate in our school play.  Last year, she couldn't be heard at all during the play.  This year, the directors gave her a small singing part duet as they were so thrilled as well.  Hopefully next years play she'll get a real part now that she does have a voice!  at this years performance you could hear her without a microphone, and she was louder than some of the other actors!  I was beaming, so was everyone in the audience who knows her story.  parent after parent came up to me saying, "wow, Kaitlyn's voice was so loud!'

THANK YOU DR SMITH!  I am just so eternally grateful to you and your research into solving this problem.

BUT parents out there, please know that Dr Smith's studies do show that the sooner you can do this surgery after the paralysis happens, you get better results.  The paper should be published soon (in which Kaitlyn will be one of 30 participants).  We were so happy to fly back out so that her results could be part of that study. 

Oh and a side-note.  A fabulous ENT from Stanford (Lucille Packard Children's' Hospital) actually few out to Utah with us to observe Dr Smith do Kaitlyn's surgery.  She has since done this surgery here back at Stanford here in the SF Bay Area. Dr Anna Messner.  I wanted to be sure to let folks know reading this there there is a San Francisco resource for this now as well! 

 PS, kaitlyn got braces right after her surgery last year and JUST had them off yesterday!  Here is a picture of her post 1st round of braces. 


Here she was rock climbing in Reno the weekend prior to our going to Utah:

and our family (with Quinn, now 6) in Truckee/Tahoe Memorial Day:

My daughter is now 9 years old, hard to believe she was 1.5 pounds at birth and had so many medical issues.  She is one amazing, wonderful, happy, delightful, bright amazing strong-willed girl!  she is willing to try anything! It makes my heart just soar to see how far she has come!  I'm one very lucky mom!  Kaitlyn I love you, you are going to do amazing things with your life.  I couldn't be more proud of you!


9 comments:

Jamie said...

I've followed your blog for a long time and I'm so happy to hear a follow up report. My daughter was born at 25 weeks and has a paralyzed vocal cord because of her PDA surgery. We've been talking to our ENT about this surgery for over a year now. I've just been so worried about doing something completely elective with the chance of not getting results. She will be 8 in July. Your posts have almost convinced me to go get it done tomorrow! Her voice is so different! It is so hard for Lindy to be heard in a classroom (or anywhere) and I think this could be life changing. I'm much more convinced after yours posts to try this! Thank you for the videos.

Jamie said...

I've followed your blog for a long time and I'm so happy to hear a follow up report. My daughter was born at 25 weeks and has a paralyzed vocal cord because of her PDA surgery. We've been talking to our ENT about this surgery for over a year now. I've just been so worried about doing something completely elective with the chance of not getting results. She will be 8 in July. Your posts have almost convinced me to go get it done tomorrow! Her voice is so different! It is so hard for Lindy to be heard in a classroom (or anywhere) and I think this could be life changing. I'm much more convinced after yours posts to try this! Thank you for the videos.

Kimberly (Anthony's Mom) said...

She sounds wonderful!! How amazing! I've followed your blog for years. My son Anthony was a 26 weeker. Also had PDA surgery. He's 8 years old now. He has a high pitched voice. Especially when he's excited. Doctors keep telling me his tone will change as he gets older. I hope so. He most likely is going to be getting his adneoids taken out soon, as he has a lot of sinus issues. So that could be attributing to it as well. The "preemie " issues never seem to end. But I'm just thankful he's alive.

Kim

Anonymous said...

Oh wow, I am so happy to hear this! I so much wanted to hear an update, and I thought you had done with blogging altogether. What a great report! She is really perfect and amazing. It's been quite a journey, and it is turning out so beautifully. So, so happy for you all.

Sarah said...

So pleased for your daughter! What a road you have all had, but thanks to awesome medical teams, amazing things can happen!

Priya said...

Congratulations to Kaitlyn on all her progress! She seems like a beautiful and happy young girl with a very prosperous acting career ahead of her! ;)
My son was a former 25-week preemie. He too has left vocal cord paralysis from a PDA ligation. He is having the reinnervation surgery RIGHT NOW! I came across your blog a while back and found Kaitlyn's story (and her before and after videos) to be very inspirational. Thank you for sharing your story. We are very excited and optimistic about the results for our son.
For your reference and any other parents who come across your blog, there are an increasing number of doctors around the country who are familiar with this surgery. (NYC - Dr. Scott Rickert; Philadelphia - Dr. Karen Zur; Tampa - Dr. Joshua Mitchell).
All the best,
Priya

Joy Cameron, Mrs. US Continental 2015 said...

Dear Kaitlyn,
Thank you for sharing your story. I met with Dr. Marshall Smith yesterday, and sat in that exact same chair, and did the same test. Six months ago in May, I had a total thyroidectomy and was the 1% who ended up with right vocal chord paralysis. I had fat injection the end of August which only lasted two weeks and my body reabsorded it all (I also have Lupus, Sjogren's, and Hashimotos which are autoimmune diseases). I am very encouraged to hear your story, as I am having surgery December 8th with Dr. Smith. I am very happy for you, as I know how it feels to have little to no voice.

Your Fan,

Joy Cameron,
Mrs. US Contintental, 2015

Lisa said...

Thanks to your blog, I contacted Anna Messner at Stanford--My nine year old daughter is having this surgery next Monday!

best, Lisa Wilson

nicu mama said...

https://youtu.be/CNc9SRWuLTs

I had a premature baby born at 25wk .. I'm trying to raise awareness and share my story. Lovely blog BTW