Anyone's child have a laryngeal cleft or fistula?

[Wild Lupine]

DS is having a bronchoscope in a few weeks. Both his ENT and his SLP/feeding specialist have been saying his symptoms are consistent with a laryngeal cleft or esophageal/tracheal fistula. The scope will tell us for sure, but until then I'm trying to figure out what the treatment will be like. How long is the recovery, will his speech be affected, etc..

Any advice or experiences are welcome!

[2boyzmama]

My son has laryngomalacia (along with tracheo and bronchomalacia). Initially as a newborn, tracheal-esophageal fistula was on the list of differential diagnoses, and I was led to believe that if it was that, it was pretty emergent and would need to be fixed quickly. We did a scope and ruled out the TEF, found the laryngotracheobronchomalacia instead.

What are your son's symptoms? I think I saw in your siggie that he's 2? From the little bit I know of TEFs, it would be odd to get to age 2 without it being diagnosed already. I could be wrong though, as soon as they ruled it out for my son, I stopped researching it.

[Wild Lupine]

I'll probably have to write a book, or at least a blog post, about how we have gotten to age 2 without a clear diagnosis. (He's actually 23 months, but still...)

He had other issues, low tone, gross motor skill delays, FTT, and they all resolved themselves with PT and OT. For a long time it was assumed that he would outgrow the feeding issues as well. His swallowing specialist also took months to order a swallow study. I don't know why, although I have cynical theories involving money speaking louder than poverty. Until the swallow study we didn't know how much he was aspirating, at that point the referrals he should have had finally came through.

[2boyzmama]

I think I might remember some of your old posts (I see your username change now).

It seems odd to me that if they suspect such a potentially serious diagnosis, and with a bad swallow study, why would they wait WEEKS to do a scope? A scope is relatively easy.

Preaching to the choir

Sorry I don't have more info for you!

[Wild Lupine]

Originally Posted by 2boyzmama

I think I might remember some of your old posts (I see your username change now).

It seems odd to me that if they suspect such a potentially serious diagnosis, and with a bad swallow study, why would they wait WEEKS to do a scope? A scope is relatively easy.

Preaching to the choir

Sorry I don't have more info for you!

Yes, it is odd to me, too. I think so many other people just assumed it was developmental for so long that it was hard to get out of that mind-set.

But we do have someone pulling for him. After the swallow study his feeding specialist was still taking a 'wait-and-see' attitude so DS's EI case manager actually got the director of early intervention services for the entire county to call the specialist and get her to move faster.

I'd really like to switch feeding specialists but we go through the state and she's the only one in our area. It's funny, everyone else raves about her, but I'm not impressed.

However she got us a referral to the pediatric swallowing team at Mass Eye and Ear (affiliated with Mass General), so I think he is in good hands. They're among the very best. Hopefully whatever they find they can fix it right away; I don't want to go through another winter with his lungs being so vulnerable.

[moongazer]

My DS was born with two TEFs. He was diagnosed at birth, however, because he also had esophageal atresia. I think TEF without atresia is called Type E. It is a fairly rare form. And I think that it is more common for this type to go longer without being diagnosed.
If it is a TEF, it will need to be surgically repaired. I would think your son's recovery would be totally different from DS because he is so much older. So far, the repair has not affected the quality of the sounds he can make, even though he still has one paralysed vocal chord. He still hasn't really said his first word, though, and he is 16 months. I am not sure if that has anything to do with his birth defect or not.

You might want to check out: www.eatef.org

Let me know if I can answer any other questions for you.
I'm hoping you get some answers soon!

[minmoto2]

Just chiming in for support. My 22mo son was born w/eatef,and was repaired on the 2nd day of life. As Moongazer said, your ds' recovery may be quite different because he is older. That said, my ds' ea & tef was surgically repaired on day 2, then he was on a vent for 7days. After that they did swallow studies to ensure he was not aspirating before they allowed him to eat by mouth. He has had several esophageal dilations since, but that has to do w/his atresia, not the tef. He also has tracheomalacea.

eatef.org is a great resource. Let me know if any ?s.

Mindy