EA/TEF Family Support Connection
The EA/TEF Family Support Connection was formed by and for families of children born with (Esophageal Atresia and Tracheoesophageal Fistula) EA/TEF and the medical professionals who treat them.
Information
Founded:
1992
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KellyandAndy Rackley

KellyandAndy Rackley
Hello...My name is Kelly and my husband is Andy...My son Peyton was born July 2007 with tef/ea...He is still on stage 3 baby foods and can eat crackers or vanilla wafers smashed up..he does love juices from peas or spag sauce...He only says a few words and is not potty training yet...He is supposed to be starting half ...day at day care on Monday(if they will take him not potty trained). Im excited and nervous all at the same time...Are most kids with this slower to develop then others....we have NEVER had anyone to talk to who is going thru the same thing so it is GREAT to find this on facebook.Read More

November 5 at 1:15pm · Report
Lori
Lori
Hi Kelly my son Brandon was born on 4/9/07 with TEF/EA and severe tracheomalcia, my son did not start walking until he was 18 mos and talking until he was almost 2. We had ALOT of help from early intervention and he caught up very quickly! Our son is in daycare and from all his hospitalization I feel it is TRULY the best thing for him to be around other children since all he's had his hospitals and docs most of his life!
Yesterday at 2:15am
Laura Zander

Laura Zander Other than the EA/TEF Family Support site (which was our first stop) I also came across the UK TOFS (http://www.tofs.org.uk/) which might be helpful to some of you as well, they have free leaflets in the downloads section of their website that you can print and give to family members, teachers, etc. Their FB group - http://www.facebook.com/group.php?gid=102417219682

TOFS - Tracheo Oesophageal Fistula Support
Source: www.tofs.org.uk
TOFS supports the families of children born unable to swallow. TOFS stands for Tracheo Oesophageal (esophageal) Fistula Support.
Heather Grigoriadis

Heather Grigoriadis
I am SO happy to find this group! My son, Alex, was born with EA/TEF Feb 26, 2009 at 34 weeks because he is a triplet. Very sadly, his identical brother was stillborn. Alex was repaired when he was 5 days old, spent 6 weeks in NICU, and we haven't had to do any further procedures since, but are battling with severe ref...lux. He is getting too active for the recliner chair he's been sleeping in for months and we don't know what to do now...does anyone have suggestions on what to do to elevate an active 8 month old?? Just elevating the mattress doesn't seem enough to me and we are so scared to damage his esophagus with the reflux. It is hard enough to get him to drink the bottle...thank you! I am really looking forward to sharing and learning with all of you here!!Read More

November 5 at 8:40am · Report
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Laura Zander
Laura Zander
Everyone's situation is different but don't ever feel alone! We can all relate in some way to each other, connecting our families :) We didn't have much issue with reflux, but I researched a lot in the beginning because the doctors were very concerned about that, even prescribing Zantac as a precaution. She did have terrible colic & gas and ... Read Moreteething was pretty bad too, but my mom suggested homeopathic tablets and they worked really well (also used simethicone drops for gas relief). Some of our doctors have dealt with EA/TEF patients and some not... so it felt like sometimes they knew what they were talking about, and other times had no clue. I had to be the one to ask about some of the tests/procedures (barium swallow & dilation) as they didn't seem too forthcoming with info. Her general doctor said we needed to do a swallow study but then when I told her gastroenterologist he said that wasn't her problem, she would eat and swallow, but stuff just wouldn't pass through the stricture. If I see anything else that could help, I'll let you know!
November 5 at 12:58pm
Lori
Lori
Hi Heather our son is on Protonix which seems to keep his reflux in check very well. We used what is called reflux wedge in his crib and lowered the mattress to the floor. It has a sling that straps them in, As he outgrew this we used big pillows in his crib which helped prop him up. We also make sure we have his meds reevaluated every couples ... Read Moremonths because as they grow (and they grow fast) the meds should be increased just as often. Their is another test they can do, I am not sure of the name but it test the level of the reflux as to whether its moderate to severe and helps them determine what types of meds your child should be on (it's some sort of acidity test which require your child be strapped in and lay still for about 30 minutes, it's a tough one to go throuhg time wise but well worth it in the end.
Yesterday at 2:20am
Laura Zander

Laura Zander If your newborn is currently in the NICU and would like to find out more about complimentary NICU photography services in your area visit http://www.picturesofhopefoundation.org

Pictures of Hope :: Made With Love :: Complimentary NICU Photography Services.
Source: www.picturesofhopefoundation.org
Please contact the Pictures of Hope Foundation at info@picturesofhopefoundation.org with any additional questions or comments.
Mindy Ferris-Glasscock

Mindy Ferris-Glasscock Hello!!!! I am so glad to see the EA/TEF Support Connection on Facebook, and look forward to talking to other parents going thru the same situations.

My Son, Ryan, was born with EA/ TEF Type C in September 2005, Dallas Texas .

October 29 at 4:30pm · Report
Katie LeBlanc McCormack
Katie LeBlanc McCormack
How is your son doing??
October 30 at 7:37pm
Mindy Ferris-Glasscock
Mindy Ferris-Glasscock
Hello!! Ryan is doing so much better now ~ his first two years were rough. He had a barium swollow last week and he will not require another dialation at this time :)
November 2 at 4:27pm
Mindy Ferris-Glasscock
Mindy Ferris-Glasscock
Well, I spoke too soon! Ryan choked on some food at his daycare and it got lodged into the stricture - so we went in and had the food removed and a dialation on 11/3. We are home and he is doing great!!!!
Fri at 10:16am
Meredith

Meredith Does anyone live in northern Illinois? My daughter would love to meet another child that has gone through the same as she has.
She's 9.
Email me if you want. THANKS!
Meredith

Meredith

Meredith Hi all!
Happy to see everyone on here. My daughter was born with TEF/EA among other things and she just turned 9! She is so mature from having to learn so much, so fast!
Please feel free to email me or add me as a friend if you have any questions! I'm sure we all have our days and would really love to talk to someone that truly understands!!
Hugs to everyone!

October 28 at 9:50am · Report
Samantha Johnson
Samantha Johnson
Hi meredith...always good to hear about someone with an older child...my son is 4 months and it really get me down sometimes...just added you as a friend
October 28 at 11:34am
Meredith
Meredith
Hi Samantha! Thanks for the add.
Talk with you soon!
October 29 at 5:18am
Katie LeBlanc McCormack
Katie LeBlanc McCormack
Hi Samantha, I just added you as a friend as well. My daughter is 7 months old and doing very well!! It was the hardest thing we've ever dealt with. Worth all the pain and heart ache...
October 30 at 7:39pm
Janell Wiesler

Janell Wiesler
Hi, so glad I found this support connection! My daughter just turned a year old and was taken from me right after delivery for observation. Turns out she had tef and had to have surgery. After 2 weeks in the NICU she was able to come home. She is still on stage 2 foods and we are having trouble trying to figure out wha...t she can and cannot have to eat. She only has a half of tooth on the bottom so she gets very frustrated.. sorry for the rambliing, just had to let that out to people that actually knew what I was talking about!Read More

October 26 at 7:14pm · Report
Staci Spitler Morris
Staci Spitler Morris
My son's EA was repaired at two years old (in April 2009), and he is just now starting to eat stage 3 and "real" foods. We started going to a feeding therapist, but I think all she is doing is encouraging my husband and myself because my son won't eat in front of her. It's a long road, but it seemed like my son one day just got it. It's tough when you feel like no one understands what you're going through - that's why we're all here on facebook :)
October 28 at 2:32pm
Laura Zander
Laura Zander
Hi Janell, at that age my daughter was able to eat stage 2 foods, homemade chicken noodle soup puree and the Gerber puffs, that was pretty much it. Right when she turned a year old she began being interested in "our" food, so we ended up having to do 2 dilations to stretch the scar tissue. She is a little over 1 1/2 now and still eats #2 foods, ... Read Moresome #3, but now eats small pieces of broccoli, whole rice, crackers (of any variety), just recently toast (even with peanut butter!), gerber snacks including their cheetos and crackers, toddler rice cakes.. but she is actually a little hesitant to try new foods, we think its the texture?
November 4 at 8:50pm
Laura Zander
Laura Zander
Oh and these foods are very popular with my daughter lately (avail at Toys R Us & Babies R Us) Ella's Kitchen Smoothie Fruit & Plum Organic Baby Foods. They come in a pouch so less mess and she feels more grown-up because she can hold/squeeze them herself. She loves all the flavors, especially pumpkin & banana.
November 5 at 1:32pm
Bernadette

Bernadette Hi, glad to have found you all. My son William (one of BBB triplets) was born with EA/TEF on July 27th 2004.

Amy

Amy Hello, I am excited that I found this facebook! My son is 11 years old, and was born with EA/TEF with severe trachia malacia. For all the new parents, grandparents, siblings, or just loved ones, please feel free to contact me, I am a research MOM, and have been down a long road! I can't wait to see everyone's story, and wish everyone a great day!

Samantha Johnson

Samantha Johnson My son is three months old...has had a bad cough for about 2 weeks...thought it was an upper resp infection..so did his pediatrician...the breathing treatment is making his cough worse...I am now thinking he has either relfux or needs a dilation...anyone have any experience with a persistently bad cough??????

October 22 at 3:43pm · Report
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Samantha Johnson
Samantha Johnson
Thanks..we are going back to the surgeon on Friday...I am going to take your post with me so he can check it out..I will let you know what we find out :)
October 26 at 6:45am
Lori
Lori
I wish you all the best! I know to that the coughing can also occur if there are possible leaks in the repair site of the TEF/EA; however if there were a leak it would also show up in the lungs. Got your request and confirmed. if I can help in anyway, let me know!
October 26 at 7:17am
Aimee Flint Salyer

Aimee Flint Salyer
My son was born on May 19th with EA/TEF type C and after a 12 day stay in the NICU was sent home and has been doing great. We have not needed any dialations yet.

My major concern is that I plan on starting him on solids in a months time and am scarred to death of him chocking on food. If he is going to have trouble wit...h eating will this most likely be evident from his first feeding? Would people recommend me bringing him in to see his pediatrician or should I try and get him in to see his surgeon if he is having trouble?

Any advice on solid feedings would be greatly appreciated.

Thanks.Read More

October 21 at 8:02pm · Report
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Audra Hampton
Audra Hampton
My son was born April 9, 2009 with EA/TEF Type C. We started Stage 1 baby food in late September. He is now at Stage 2 and seems to be doing ok. He has a lot of coughing - to clear his throat- when he eats. I just give him lots of drinks in between bites. He sees the GI, for the first time since his release from NICU, on Monday. Hopefully, he is not in need of a dilation just yet. He has done awesome so far, so I hope we can keep it up.
Sat at 7:15pm
Lori
Lori
Laura is right, best thing to do is remain calm when they choke, (as hard as it is). We are fortunate that we had early intervention to help with Brandons eating and to teach us how to remain calm. There is hope and light at the end of the tunnel. Our son is now 2/12 and eats just about every thing from apples to hot dogs, yes the one thing ... Read Morethey said he would never eat! We were scared but these little ones seem to know their limits and somehow determine what they can or cannot handle. We worked on conquering our fear, as no one wants to be afraid of their child, and in doing so our little one has overcome so many obstacles with his TEF that it absolutely amazes us!
Yesterday at 2:26am
Erin

Erin Hey everyone,
has anyone had Mitomycin-C used to help with scar tissue on/in the esophagus?? My son Philip has had 2 apps with no improvements:(
This will be his 14 dilatation. We have been going every two weeks since June. HELP!!!

October 19 at 12:36pm · Report
Robert Kindl
Robert Kindl
our daughter Lily is needing dilations every 2 weeks aswell ,her throat closing up with scar tissue i would love it if there was something we could do to stop it or slow it down. hopefully things will improve for him soon
October 25 at 8:02pm
Yu Marie Ciel Remitar

Yu Marie Ciel Remitar Best wishes for good health for everybody... Because i know, it is an emotional and financial bagages for parents and close relatives seeing patients with such case...

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