Trach Baby Rebekah Talking With Passy Muir (Speaking) Valve

Rebekah 'talking' with a Passy Muir Valve taken December 2nd, 2009.

Rebekah is a 7 month old with full trisomy 18. Trisomy 18 is defined as an extra 18th chromosome, a condition that is defined as 'incompatible with life.'. She was not expected to live due to severe apnea that had her turning blue around the clock. Turned out the apnea was all obstructive and she has not had an apnea event since her tracheostomy! The obstruction is due to micronagia (small jaw) and her 'normal' tongue.

When a baby is trached, they cannot make sound because no air passes the vocal folds and infant trachs are not fenestrated to allow speaking capability. Rebekah is wearing a PMV (Passy-Muir Valve) which allows the air to be inhaled through the trach, but it must be exhaled through the mouth and nasal passages. You must start slowly with a PMV and work up time and tolerance with it as it builds up lung strength and more mimics a 'normal' breathing pattern. You must be careful of the obstructions that exist.

This video is amazing for us because when Rebekah was first trached, she could not wear the PMV unless she was fully sitting up or on her side (so that her tongue did not fall back into her throat). She is lying down in this video on her back, propped up only slightly on a Boppy pillow. It is also amazing because she didn't really make much noise when she wore her PMV. She just recently 'discovered' she has a voice and she is having fun exploring making sounds! She is even managing to purposefully push some air past her trach (without the PMV on) to make a few squeaks here and there!

She currently can tolerate wearing her PMV for about 30-45 minutes at a time. We are hopeful that she will continue to get better and will be decannulated one day. :-)

You can read more about Rebekah's incredible journey at http://buddzoo.blogspot.com.
Thanks for watching!

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[LostJedi26]

When she's breathing, it sounds like her airway is clogged with mucus. Is that type of difficulty breathing normal for her?

How is she doing now? I'll go check the journal you linked to up top.

[buddzoo]

She doesn't have any diificulty breathing with a PMV. She thinks its funny to get phlegm in the back of the trach and make noises. Her SpO2 level is great with a PMV and she wears one 24x7 (unless capped). We've had sleep studies to make sure it is safe. Now, a year later, we were hoping to actually decannulate, but she still has obstruction from her tongue when she sleeps. So no cap when sleeping, and no decannulation (yet), but we are still fine with using a PMV around the clock.

[castaway]

What condition does she have? I have posted videos of my niece who also has a trach. She has a trach due to having a floppy epiglottis.

[buddzoo]

@castaway If you expand a description of the video, there is a more detailed explanation of her condition - Trisomy 18 - Edward's Syndrome.

[buddzoo]

@castaway If you expand a description of the video, there is a more detailed explanation of her condition - Trisomy 18 - Edward's Syndrome.

[77apollox]

We are debating a tracheostomy for our son who is 11 days old. Now that you are in a year or so how is the communication. I would be really curious. BTW she is adorable and what a blessing.

[buddzoo]

@77apollox For Rebekah, the tracheostomy was a life-saver! She is now two and makes many noises and wears the passy muir valve 24x7. She cannot speak in words (she is very delayed due to her condition), but she talks in her own way. :-)

[ANG3LK1LL3R]

Truly beautiful. I myself a parent of infant with a tracheostomy. my 11mo old son has one due to having a condition called bi-lateral vocal cord paralysis. I am looking forward to the day i can hear his voice.

[bellamor33]

I bet you were so excited the first time you heard her "voice"!! what a blessing in such a trying time :)

I am wishing you all so much luck and sending many prayers!

[robertanita]

Awwww, she is sooooo cute. Lovely video of a beautiful baby! Thanks for sharing!

[mary2587ful]

shes so lovely..i also have a trach baby but he doesnt have a passy muir valve thats why we cant hear him talking..i just wish here in philippines has an availabe passy muir valve..

[mary2587ful]

hi! your baby is so adorable.i also have a trach baby but he doesn't have a passy muir valve that's why we can't hear him talking..