T E Fistula

Welcome to Share! I just sent a message to another TE Fistula mom who might be able to offer you a bit of encouragement. She has a blog called "Ansley's TE Fistula" if you're interested in reading about another amazing child.

Tracy

Hi again, I just posted a response on your short story about my daughter. I curious has your son had any dilitations on his esophagus? My daughter had her esophagus dialiated every week for months, then every other week, and finally once a month. She had her last dilitation shorty after her first birthday. Foods were very difficult for her at first, but more because of the different textures in her mouth then any medical problem with her esophagus. Take it slow and offer different types of things. Some foods that I was sure she would like she hated, and some things I thought she would hate, she loved.
As far as other complications coming up, we haven't had very many. She did have an aspiration pneumonia and spend a week in the hospital. She also was born with only one kidney so she is monitored very closely for kidney functions. Other than that, I would say she is very healthy child who leads a perfectly normal life. She is behind some in development. At 16 months old she weighs 18 pounds and she is not walking or talking yet, but considering how far she has come, I can't complain! If you ever want to talk please email me~I will offer any advice I possibly can or just listen if need be. jbvg358@comcast.net

Thanks Vicki for responding. My son has not yet needed any dilations being that he is still only nursing and is gaining well. (He's 15 pounds.) At the last visit to the surgeon, after I mentioned the raisin episode he, at first, said we should go for a barium swallow but then changed his mind when I said that I preferred to wait a while before starting food. The doctors seem to agree that exclusively nursing for as long as he is gaining well is good. Did your daughter need the dilations before she started on solid food or after or both? Is your daughter still followed up by her surgeon regularly? By the way, did your daughter have a G tube put in during her surgery? Also, you mentioned that she once had aspiration pneumonia was that when she was really small or more recently? My son had it at one day old but not since. Is your daughter being treated for reflux? My son takes a low dose of zantac but doesn't show signs of reflux. I met someone whose child had a tef and she told me that her doctor warned her that reflux in a tef baby can cause cancer and therefore even if she has no signs she must have an endoscopy done once a year. Did you ever hear of such a thing?I'm otherwise glad to hear that your daughter is doing well. My son is also somewhat delayed, he doesn't yet roll but he will hopefully start physical and occupational therapies soon. Well, thanks for listening.

Thanks Vicki for responding. My son has not yet needed any dililtations being that he is still only nursing and is gaining well. (He's 15 pounds.) At the last visit to the surgeon, after I mentioned the raisin episode he, at first, said we should go for a barium swallow but then changed his mind when I said that I preferred to wait a while before starting food. The doctors seem to agree that exclusively nursing for as long as he is gaining well is good. Did your daughter need the dililtations before she started on solid food or after or both? Is your daughter still followed up by her surgeon regularly? By the way, did your daughter have a G tube put in during her surgery? Also, you mentioned that she once had aspiration pneumonia was that when she was really small or more recently? My son had it at one day old but not since. Is your daughter being treated for reflux? My son takes a low dose of zantac but doesn't show signs of reflux. I met someone whose child had a tef and she told me that her doctor warned her that reflux in a tef baby can cause cancer and therefore even if she has no signs she must have an endoscopy done once a year. Did you ever hear of such a thing?I'm otherwise glad to hear that your daughter is doing well. My son is also somewhat delayed, he doesn't yet roll but he will hopefully start physical and occupational therapies soon. Well, thanks for listening.

My daughter's surgeon does dilitations on ALL of his TEF babies. He told us that not all surgeons do, but he has had better results with babies that he dialates. She had her first dilitation while she was still in the NICU. She was in the NICU for almost 2 months because she had a complication called a chylothorax that required another surgery. Once she was out of the NICU, we took her back to the hospital once a week for about 8 months to get dilitations. Then we took her every other week for about 1 month and finally once a month. In Jan. (she was 11 months old at that time) she had a dilitation and that was what caused the pneumonia. They put contrast dye down the esophagus after dilitations and that is what she aspirated. The last time she saw her surgeon was in March for a barium swallow and he determined that her esophagus looked good enough not to follow up for 6 months! So yes, we went from seeing her surgeon weekly to seeing him in 6 months.
As far as the gtube goes, my daughter never had one. She came home from the NICU on a NG tube. We had to learn how to run that tube down her nose and into her stomach. She was seeing a speech therapist and learned to take a bottle within about a month of being home. She never had to be tube fed again.
She was on Zantac as well until about 2 months ago when her peditrican determined she didn't need it. She never showed signs of reflux either. I have never heard of reflux causing cancer either. That's odd.
 She is somewhat delayed. She rolled at 4 months, was sitting alone by 6 months, and started crawling at 11 months. The walking is what she is really having a hard time with. She can take a few steps but that's about it.
 The other big issue we have had with her is weight gain. She is VERY slow to gain weight. She was on 24 calorie formula for a long time and that did help. It dosen't sound like that will be an issue for you though since your son is 15 pounds at 6 months. She is 18 pounds at 16 months!
Has your son had any barium swallow studies done to check for strictures? The barium swallows can really be helpful in determining how his esophagus is doing.
I hope I answered all of your questions. If you think of any more don't hesitate to ask!!
Vicki

Forgot to add this in my last message~ www.eatef.org
Great website for TEF families. You might want to check it out
Vicki

Thanks Vicki, I think you've answered everything. My son had a barium swallow while still in the NICU and then one at 2 and 1/2 months (requested by his ENT). Each one showed a mild narrowing though I'm not sure what that means. They tell me it is normal for a TE Fistula baby. Does your daughter still have a mild narrowing after all of her dilitations? Also, what does a dilitation mean? Is it done on an out-patient basis in the hospital or was she admitted? My surgeon checks my baby about once every month or 2 (I'm not sure why) and has never said anything about dialating I only know about it from the web. He, in general, doesn't like to worry me and so never discusses the future only reasurres me that everything will be ok. I, on the other hand, would prefer to be prepared for what to expect even though I know that hopefully he will, as the doctor says, be ok.
By the way, does your daughter still have a funny cough? Did she ever have noisy breathing or stridor?
Also, if you don't mind my asking, what is chylothorax?
I'm glad to hear that your daughter is doing well and it doesn't sound as if she was to delayed. My son is not even rolling well yet but I'm not worried. As you mentioned, he's had a rough start but he will get there.

Yes she does still have a slight narrowing of her esophagus. Her surgeon assured us that was perfectly normal for a TEF baby and that her esophagus will never be exacly a straight tube like yours and mine.
She had 2 different types of dilitations done. The first was done in xray without any type of sedation. They would run tubes of various sizes down her esophagus to "stretch" the tissue. As you can imagine, this was very tramatic for her and she fought them tooth and nail the entire time. So her surgeon decided to start doing her dilitations in the Operating Room under general anestesia (spelling?) For this type of dilitation they would take her to the OR, sedate her, start on IV and then run a tube down her esophagus and blow it up like a balloon to stretch the tissue. In the beginning we would stay overnight in the hospital with her just because she had anestesia. Yes, once a week in the hosptial overnight got very tiresome. But once she was about 6 months old they started doing it on an outpatient basis.
I have heard that many TEF babies have a funny cough or noisy breathing, but I can't really say that my daughter does. She rarely coughs unless she is actually sick, and her breathing dosen't sound funny to me at all. Maybe we just got lucky on that?
I don't mind you asking at all~ A chylothorax is a leak in the thoratic duct (this is a duct that carries fats through your body) and this leak causes fluid to accumulate in the chest cavity. Her chylothorax was caused by the surgery to repair her esophagus. The duct was described to me as "clear and as thin as a strand of hair" and her duct was accidently cut during surgery. The duct will usually repair itself, but she was losing incredible amounts of fliud through her chest tube so they took her back to surgery to try to locate the leak and repair it. The surgery was actuallly unsuccessful, but her duct did repair itself with time. That is why she was in the NICU for 7 weeks though. We were told in the beginning that she would only be there for about 3 weeks.
I have a blog called " Ansleys TE Fistula story" if you want to take a peek at it. Also, there is another TEF mom on here with a blog called " My TE Fistula story."
I hope I'm helping to answer some of your questions and not just making you worry more. Your son sounds like he is doing wonderful so keep up the good work !
 
Vicki

Thanks again for answering. The more I hear, actually, I think the less I worry. It's the unknown that worries me more, or the unexpected.
I actually did read part of your blog and part of the other blog as well. I do plan to finish them as soon as I get a chance.
I'm thrilled to hear that your Ashley is doing well and I thought that all TEF babies have funny coughs so I glad that that is not the case. You mentioned that Ashley's esaphagous is mildly narrowed, can she swallow everything or must she be careful to chew things better.
I spoke tonight to my friend (we were actually introduced after my baby's birth by a mutual friend). Her baby also had EA/TEF and now has a mild narrowing. She is now having lots of difficulty swallowing. She eats baby food fine but today, for instance, her feeding therapist gave her a small crust of bread and she was not able to eat it (she's about 14 months and never had a dilitation). She also at times, gets things stuck in her esaphagous. Her Dr. doesn't think her narrowing is to bad and isn't sure that he will do the stretching. That doesn't sit well with me. What do you, having more experience with this than I, have to say?
One last question, how is your daughter's speech. Did the TEF affect it? Does she talk yet?
I hope I'm not taking to much of your time, thanks tons, and enjoy Ashley, she's really adorable!



Diana

Diana,
There are no thanks needed for me answering your questions. I enjoy talking to other TEF moms and if I can be any help at all, I'm thrilled!
As far as Ansley's speech goes, she makes tons of noises. She is working on words, but there are only a few that she can really say, but she sounds completely normal. You would NEVER look at her or hear her and think that she had so many problems at birth.
Ansley is eating all table food. She can eat most anything as long as it's not too hard or chewy. She eats chicken, fish, vegetables, and she LOVES bread. I am very cautious about giving her small bites. There have been a few times that she swallowed it whole and threw it back up, but that is only because she swallowed it whole! As long as she chews it up, she is fine.
In my opinion ( and this is just my opinion, I'm not a doctor) the dilitations were very helpful for Ansley. We could see on her x-rays where her esophagus was more narrow and we could see progress after her dilitations. It also helps that I had the utmost respect and trust in her surgeon and if he said he felt she needed the dilitations, then I trusted his judgement. I can not say where she would be today without the dilitations, but she is eating and swallowing just fine!
I would not lie to you and tell you that the dilitations were always easy... they weren't. She wasn't allowed to eat for 6 hours before the procedure and that was hard at times. She would also wake up from anesthesia and sometimes she would be smiling and happy and other times she would just cry and cry. They say it's not painful, but I'm sure it gave her a sore throat and the IV site was sore too I'm sure. The overnight visits in the hosptal were hard too because she didn't sleep well with them coming in every 2-3 hours to get her blood pressure, temp., etc. It was not the most difficult thing she has faced, but it wasn't really "easy" either. At least not for a baby who dosen't understand what is happening.
Have you thought about starting a blog? I would love to hear how he progresses! Please keep in touch!
Vicki
 

Hi Vicki,

Thanks for responding.
I'm going to share your opinions with my friend (the other TEF mom), I'm sure she'll be glad to hear.
Perhaps I will start a blog one day in the near future and I will surly keep you posted on how my son is doing. His next appointment with the surgeon is in 2 weeks. I think I may share some of your info with him although, like you, I trust him 100%. I know he's a top of the line surgeon and we were very lucky to get him.
Be in touch,
Diana

Hi,
We have a son with TE fistula, he will be four months tomorrow. We had a follow-up yesterday with his surgeon. He is to have an esophagram done (waiting for apptmt call) and most likely will need his first dilation since his repair. I read your exchange, and it sounds like I can learn from your experiences. I hope your children are doing well. His esophagus was "thin," according to post op discussion. This makes me nervous about dilation. He also will begin solids soon. I'm scared of choking. How did you handle first feeds?

Hello tjswion!

Congratulations on the birth of your son! I'm not sure what a "thin" esophagus means. I have not heard that before.
My daughter is almost 17 months old and she is eating regular table food. I am scared of her choking too, so I take my time and give small bites.
We started her out on rice cereal which she hated. She would not eat it so we went on to pureeded vegetables and meat. It was hard to get her to eat baby food for a long time, but eventually she got the hang of it.
If you have any questions or just want to share your experience, I'm all ears! Keep us posted!
Vicki

Welcome Tjswion and congratulations on your son. Good luck with him and remember, I think there is something very special about these tef babies. Their delicious, adorable, and because of all they've gone through, I think we're bound to love them even more!
Vicki, I told you that I'd keep you updated.
I was back at the surgeon for a check up and he was very happy with the way my baby looks. He told me I don't have to come back for 3 months. (Until now it was every month or 2.) I told him that I am continuing to strictly nurse for the time being which he liked very much. I asked him if, when I start solids, I must start him on pureed food (which my other kids HATED) or can I go straight to table foods like I did with the others. I was very excited that he felt strongly, that I should treat him exactly like the others and go straight to table food. He says that he should be just fine! He's had tons of experience with tef (he's been a surgeon for nearly 45 years) so I trust that many of his other patients must have been fine with all foods.
Tjswion, what is the reason that they are dilating your son? Does your surgeon do it to every baby or does your son have a problem swallowing?
I also asked my surgeon (Vicki if you recall I'd asked you about this) about reflux. I told him that I hear on the one hand that if he has no symptoms perhaps we should stop the zantac but then my friends doctor says that reflux can cause these babies cancer and recommends a yearly endoscopy to keep an eye on it. He answered that it is much to early to worry about any such thing and at this point an endoscopy is risky and so he definitely doesn't recommend it now. However since he is happy on the zantac (he's on a pretty low dose), and it can't be doing any harm, so why stop it? So, for the time being, I will continue .8 ml of zantac.
We have an appointment in a few weeks with the ent to check on the laryngo-trachea malacia but he is finally starting to babble though he still cries funny. I'm sure they say its getting better and with time it will be perfect.
Keep you posted and please keep me posted as well.
Thanks for listening,
Diana G.

I wanted to clarify one thing. I first started my kids on solids when they were close to a year old (under doctors guidance of course. This is great for a nursing baby if the baby is gaining well only.) At that point they are able to tolerate table foods. (I did offer baby food first but they refused it. They loved table foods though.) I would never have attempted this with a 4 or 5 month old.

Diana,
I'm so glad that the visit went well and there are no appointments for 3 months! That is wonderful news! My daughter was on 1 ml of Zantac twice a day until she was around 12 months old. I agree that there is no harm in leaving him on it at such a low dose.
I wish you tons of luck when you start solid foods. It took my daughter time to adjust to it, but EVERY baby is different. Keep us posted!
Vicki

Our son tried moving to a higher flow nipple, and he started choking. We are having the esophogram to check if there is any stricture at the surgery site. If so, which the surgeon thinks there is due to his symptoms, he will have the dilation. He said that most kids by now have had at least 1 dilation, and Eli hasn't had any yet (4 Mo.) We did try solids, and he spit them up, so I think he probably will need dilation. Our surgeon only does dilation as needed. He said we may end up developing a schedule, every few months-depends on how Eli does. Some kids do, and others don't.
 Eli is on Prevacid and Reglan for reflux. Reflux can be "silent" without visable clues. We were told he'd be on meds probably for the rest of his life to prevent reflux and damage to the already weak esophagus.

My son was also choking with feeds for a while. When he was about three and a half months old, we did something similar to the esophogram called a video swallow study. It showed that with the faster flow nipple or the thinner barium, he wasn't swallowing as fast as the milk (barium) was coming, and therefor it pooled in the back of his throat which caused the choking. They said this was very common in these babies who did not mouth feed right away. My son was nursing and so they advised me to pump before nursing so that he would get the milk slower and he wouldn't choke as much. This certainly helped. He did outgrow it and can nurse fine now. No dilations were needed. We did not try solid food though, however the surgeon hopes that he will do fine but I guess time will tell.

Good luck and please let me know how your baby does.

Diana

Hi. I am glad to hear that your little one is doing well. My daughter was born with TEF and esph. atresia, along with other complications, due to surgerical error she now has a vocal paralysis that will most likely last the rest of her life. So she did not have her first bottle till months old. After that she sky rocketed. God does AMAZING work. She has NEVER had any problems, praise God, with needing any dialiations or narrowing of her esph. The doctors say that it is an "in and out" procedure and the child having it done would go home the same day. She can eat everything just fine and with no complaints. She is babbling, saying the normal year old words (mama, dada, more, etc.) just perfectly. It has had no effect on her speech.

Blessings with your child. All will be well.

We had a little scare on Wednesday. I took the kids over to a friend, then we went to the park and my baby fell asleep on the way home. As soon as he awoke I tried nursing him, he ate hungrily but stopped every couple of minutes and made really strange noises. I knew something was wrong but had no idea what. I stopped feeding him and tried calling the Dr. We left a message and in the meantime called a paramedic. They didn't like the noises he was making and wanted to check him out in the hospital when suddenly, my husband, who was holding him, felt something moving in his chest. He quickly turned him and pounded his back. Out came a small piece of pineapple (about the size of a pea). After that he was perfectly fine. Has this ever happened to you? Should I be prepared for it to happen again? What do you do when it happens? By the way, I have no clue as to how he got that pineapple. Also the Dr. called back after he was already ok so we told him it's no emergency we'd speak another time so I don't know yet what he has to say on the matter.

Thanks,
Diana

Hi Diana
 Yes, we have had issues with Ansley getting food stuck and then throwing it up. Her issues are because she sometimes forgets to chew and will swallow her food whole. As long as she takes her time and chews we have no problems. You definately did the right thing~ I would talk to you doctor about it and get his opinion. I talked to Ansleys peditricain about her not chewing and he told me that it is a common problem with children (not just TEF babies) and that she will outgrow it.
Keep us posted!
Vicki

Thanks Vicki,

When Ashley swallows things whole and then throws up, does she always throw up right away or does it ever remain stuck for a while? Is there anything that you do to make her throw up or does she do it on her own? Also, sorry for asking so many questions but were you prepared for it or did it scare you at first as it scared us? Do you find it happens more with certain foods or when she has a cold? Lastly, I have not yet spoken to my surgeon, do you think I should call him or wait for my next visit (at the end of October)?

Thanks for your patience and support,

Diana

Diana,

Usually she will throw up right away on her own. Only once did she get food caught and it took awhile to come up, but it did come up on it's own. Oh yes, I was terrifed the first time it happened! I have learned to cut her food into tiny pieces and supervise her anytime she is eating. She will stuff so much food into her mouth at once it would choke an adult! We are working on getting her to chew and swallow before the next bite. Her doctor did reassure us that all that will come with time and maturity. I have not noticed that it happens more with any particular foods or when she is sick.
In my humble opinion, it would not hurt to call your surgeon, tell him what happened and ask his opinion. You said that it was a pea sized piece of pineapple correct? To me that is an awfully small piece of food not to go down even without chewing. My daughter does not have problems with food of that size, but she is older and bigger than your son so maybe that makes a difference. Still, I would call and ask, even if it's just for your own piece of mind.
Vicki

Thanks again Vicki,

I just left a second message at the surgeon's office. I hope he will return my call soon but the secretary warned me that he is extremely busy.
Your info was very helpful, thanks and I'll keep you posted.

Diana

P.S. Did I ever mention that I saw a bunch of your daughter's pictures and she is absolutely adorable! Enjoy her!

Hi Vicki,

I'm still waiting for a return phone call from the surgeon. In the meantime, my son swallowed a piece of a soft roll, maybe 1 1/2 times the size of the pineapple. Well shortly after that I was holding him and he threw up, with a great force, and out shot the piece of roll. I thought I happened with the pineapple because it was hard, now I'm really not sure what to think.

Keep you posted,

Diana

I picked up my son a short while ago and discovered that he had found a piece of cereal (sorry, I don't know what it's called but my kids call it the pillow cereal because it's shaped like a pillow about 2 times the size of the pineapple) and it was in his mouth. I tried to take it out but he swallowed it. I got really nervous a waited for it to come back up but it didn't. I nursed him and he was fine so I guess it went down. It sure was a relief! Don't understand why this went down and the bread did not but maybe he'll be ok with eating after all!



Diana

Maybe the cereal went down okay because it gets soggy when it's wet? Just an idea. I've got to call Ansleys surgeon this week to schedule a routine barium swallow so keep your fingers crossed for us too!
Vicki

I was thinking the same thing about the cereal but at least, maybe, there is some hope. I guess time will tell. Anyway, good luck with your appointment, we'll keep our fingers crossed.

Let me know, I curious what they will check for at this point.

Good luck,
Diana

Oh yes, definately keep your hopes up!! He may never need a dilitation or have problems swallowing. Every baby is different! And ya know what, even if he does eventually need a few dilitations, it will be ok. He will get through it, just look at what he has already overcome! I will let you know about her doctor appointment!
Vicki

Vicki,

I called the surgeon's office again yesterday and spoke to the nurse who spoke to the doctor for me. He said that if I am not yet starting solids it can wait but I should come in to see him before starting solids and he will probably send me for a barium swallow. I made an appointment in two weeks. I think I will feel better if I talk to him in person.

I'll keep you posted,

Diana