Anyone have any experience with this problem??

[ashliesmomheidi]

TEF tracheoesophageal fistula, I have a friend who's little baby with DS is getting diagnosed with it, And I have no experience but was wondering if any of you ladies have, If so can you email me at [e-mail] or just PM me here! Thanks!

[christie]

NOPE, Actually never head of it and don't even know what it is

BUT

I am Bumping this up, so others are sure to read it.

CC ~

[wrblack]

For better or worse, don't anything more about TEF now than about a year ago when I posted the following to Down-syn:
<< Abnormalities of the GI tract are not uncommon with Ds, but I don't have handy any info on incidence of esophageal atresia or tracheo-esophageal fistula. I can tell you there's a little guy in local support group about same age as my son, 4-5 years old, who had to have some GI reconstruction done very early on, and he's doing fine. Looks like Kathy R has already sent you some good info and good links. Here are a couple more, www.nlm.nih.gov/medlineplus/ency/article/000961.htm

and from www.nlm.nih.gov/medlineplus/ency/article/002934.htm <<Certain types of TEF in otherwise healthy infants are simpler to repair after a period of time has passed to allow the baby to grow. During this period, which usually is 2 to 4 months, periodic dilations of the underdeveloped esophagus may be performed to enlarge it and make subsequent repair easier. Such infants will require a venting gastrostomy tube for decompression of the stomach and feedings until repair can be accomplished.>>

We don't have any first hand experience with TEF or TOFS. All we had to deal with along with the Ds was prematurity, congenital cataracts, and a really bad case of excessive cuteness. >>

And, bad on me, here's a snip from somebody else's post:
<<Sounds like you are talking about esophageal atresia..and there is a doctor in Minnesota who has pioneered a surgery to correct this..here is more info;

www.tofs.org.uk/news_aug01_italyusa.htm

www.eatef.org/logan.html

www.easternprogress.com/news/2003/11/06/News/Professors.Son.Fights.For.Life-550002.shtml

www.tofs.org.uk/links_tofoainfo.htm

Lengthening technique for long gap esophageal atresia and early anastomosis www.afao.asso.fr/publications/chirurgie/pubmai2.htm

Info about Dr.Foker: www.surg.umn.edu/divisions/cv/faculty.htm

I do not know Dr.Foker personally,but have heard from several parents that he is a really excellent doctor...if you contact him, I am sure he will give you his opinion as to what can be done to help Sara Hope. Here is a link for contact info for the University of Minnesota(Dr. Foker's hospital) www.surg.umn.edu/contact/default.htm >>

If you wanted the old email addy of the grandmother who was making inquiries on behalf of her new granddaughter, with Ds and a problem with her esophagus, I could dig that out and PM it to you.
Regards,
Bob

[NoahsMommy]

Hi Heidi,

My little guy was diagnosed with esophagael atresia (without the fistula) about 2 hours after he was born. We have been through a lot the past couple of years with him because of it. I would be more than happy to give you any information that you need. Feel free to give my email address to your friend if she would like to contact me. Also there is an EA/TEF website with lots of information and a message board. It's www.eatef.com. There's lots of info there from other parents about surgery, G-tubes, reflux, follow-up stuff, eating, etc. Do you know how long her babies gap is? My son's was 7 cm, which is very long. Hopefully her childs is smaller. I have been told that when there is a fistula they usually are shorter gaps. My email address is [e-mail] if you would like to contact me or your friend.

Melinda

[NoahsMommy]

The previous post from wrblack (Bob) mentioned Dr. Foker in Minneapolis. He is the expert doctor for esophageal atresia, especially long gap. We had our son's surgery done in Cincinnati when he was 6 months old and we had lots of problems after. Not to say there wouldn't have been problems if we had it done somewhere else. But this time last year we made the decision and took him to Dr. Foker and had it redone. He has done more repairs than anyone and people bring their kids to him from all over the world. There were several babies there with it at the same time as Noah and three of the babies babies also had DS. Definitely worth mentioning to your friend.