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Ear, Nose, Throat issues

502 Views 4 Replies 3 Participants Last post by  AEZMama
We recently learned that my almost 1 yo ds has torticollis and a cleft soft palate along with his visibly misshappen right ear and his recently surgically repaired PDA. I'm amazed each day at how well he takes all of his poking and prodding with a smile, that none of these hurdles have broken or hurt his spirit.

Any other mamas out there with any of these issues? What "stage" are you in? We are in the preventative stage, getting physical therapy for his torticollis and we have to wait to see if he'll have speech issues with his palate.

Hope to get some wisdom from experienced mamas, see what you may know and what I can try start doing to keep him way ahead of the curve.

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Hi and welcome!

I don't have the same experience with you as far as palates, but my dd2 had torticollis and my dd1 has a misshapen ear. I just wanted to reply with my little bit of experience with that.

For the ear, she has not noticed that it's different yet and no one has made fun of her for it. I hope she sees it as something that makes her unique. She's named after a goddess who removed her right earring and threw it into the sky to make the full moon. We picked the name before her birth, but she was born on a full moon day and her right ear is the one that is affected. So we plan to tell her that story when she's older and how special that symbolism is. Her ear is cupped quite a bit and not flat to the skull like a normal ear is. When she was born it was all curled up.

For dd2's tort we just were given some stretching exercises. It was not severe but it did cause one side of the back of her skull to be flat and one ear is slightly above the other and stuck out because of it. We chose not to get a helmet but many parents have had good success with them. BTW dd2's ear was also curled up just a bit at birth, so there must be something about my womb or how they sat in it that caused that! My dd2's tort was evident at birth. I have the birth video and even as she was coming out her head was tilted to one side, causing me to have a small tear in a place that's unusual to tear in, on one side.

It's amazing how much courage children have, and how resilient they are to just bounce back and keep trying! My kids are my heroes.

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Thanks Darshani!

I was given stretches to do when ds used to favor sleeping on his right side (side of the tort) and they helped a lot and now his head is a perfect shape. His ped is great because he does a lot of preventative stuff like PT and stretches, of course his heart issues needed to be invasive. His ear sounds similar to your dd1 and I love that story!

A friend of mine did some research putting in all of ds' "factors" and found that there is a genetic issue in Poles (I'm the first of the first generation in the states) and we just got that role of the genetic die, so to speak. I'm so happy to hear that PT helped our little one with her tort.

I'm looking forward to seeing if there are any soft cleft palate mamas out there.
My 5 year nephew was born with torticollis and a cleft soft palate along with his visibly misshappen ear and ear canal issues which was evident at birth. (Interesting you should mention that genetic theory because my husband and his brother (father of my nephew) are 1st generation americans- their mom is from Poland and their dad is from Poland by way of France...)

My nephew had his soft palate repaired before he was a year old (sorry I can't remember the specifics) and now speaks & eats GREAT!!! Before the palate was repaired, he had so much difficulty eating he did have a NG feeding tube and he now sweetly calls the tiny scar his third belly button. He wears a brace at night for the torticollis and we are not sure how much it's helping. His neck is pretty frozen at a slight angle. Although, his parents believe that physical therapy has been key to helping him.

He did just get plastic surgery for his ear... Their insurance company will not pay for it as it is considered "cosmetic"!
After the bandages came off, the ear started to curl up and the parents are trying to figure out the next step...

This kid has has so many surgeries and his spirit has not been broken! He is a beautiful spirited and loving child!

Side note: teasing doens't seem to faze him... his parents brought him up to not be embarrassed of torticollis and misshappen ear. He talks about it matter of factly...

Good Luck to you.
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Thanks Coobabysmom!

You know, I don't really see ds ear being really misshappen so I don't plan on having it cosmetically repaired. I like Darshani's response and I am going to let ds know that his ear is something unique to him.

The eating issues for your nephew caught my eye. DS eats, but only prefers pureed foods or bottles. Anything with a texture or chunk he immediately starts gagging and will vomit. I have to follow up with his surgeon on that.

I just mentioned the Polish link to my dad today who forgets that my cousin in Poland has a cleft lip-I asked him to find out if he had a full cleft lip and repair or if he just has a hair lip. My cousin has a ds 1 1/2 mos older than mine, but his son is fine. Interesting! My ds just caught the luck of the draw, I guess. I'm just so happy that he is such a resilient little trooper. He takes life in stride!

Thanks mamas! This really makes me feel better.
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