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
 
Darci Beisheim

Darci Beisheim Hi! My son Noah was born with type A on 1/14/09. It was discovered by ultrasound at 30 weeks. He has a long gap and is currently still unrepaired. He recieved a spit fistula at 3 weeks and came home from the NICU at 31 days old.

Mon at 1:01pm · Report
Ernestine Joines
Ernestine Joines
Darci, I would love to talk to you! My son had a 4 1/2 cm gap he is four months old and just was repaired this past Thursday. I don't want to sound pushy but there is a better way and there are doctors who are trained and know how to help our children when no one else can. Boston Children's hospital has opened a whole center just for these children... See More. It is a scary process but in the end I think I did the right thing by coming here. I would love to pass on our sergeons info to you so you can speak with him directly. email me if you would like the information e.davisonjoines@gmail.com
Mon at 10:41pm
Darci Beisheim
Darci Beisheim
I don't think that we are in a position to travel at this point. It's just not feasible for us. We made the decision that was best for us and we have no regrets.
5 hours ago
Ernestine Joines
Ernestine Joines
I completely understand! I just wanted to say that there are some great things happening for our EA babies right now, so many treatments that would allow them to have happy, normal lives. If ever you want to find out any information I highly recommend ANYONE to contact Boston Childrens. Dr. Russell Jennings is amazing. It has been a long road for ... See Moreus, very hard and emotional my soon was just repaired but I am so pleased with the results already. I hope I didn't offend you in anyway. I just want all these babies to have great outcomes.
4 hours ago
Ashley Perkes Sawin

Ashley Perkes Sawin I'm sooo glad I came across this site on FB. It's so nice to know we aren't alone! We discovered our little boy Krew had TEF a few minutes after he was born last December. He has had to have 4 dilatations and has to have at least 6 more. I am having a hard time knowing what to feed him and could really use some help on... this! He is turning one in just a few weeks and I am trying to wean him from nursing but not exactly sure how to get him to feel full with just pureed foods. Any advice would be greatly appreciated. Thanks!!

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Mon at 12:38am · Report
Erin

Erin Hi, all! Our son, Matthew, was born Feb. 08, with Type C TEF. So great to see this page on FB! I just found it today. His eating is a day-by-day thing with trial and error, so frustrating at times. Any advice on eating would be wonderful! Thanks!

November 20 at 1:57pm · Report
Heather Grigoriadis
Heather Grigoriadis
Hi Erin, my little guy Alex is about the same age as your Matthew. What sorts of feeding issues are you having now? We are struggling day to day as well but seem to be a little better the last week, it can be SO frustrating....
Mon at 2:00pm
Mehul Patel

Mehul Patel hello eveyone,pls anyone can give information about gastric tube surgery for delayed atresia repair???? my daughter was born with pure atresia and doctoe had adviced to perform surgery after she gains weight at bout 10 kgs....can soemone here with similar problem plsss advice or add me as a freind so we could share our... experience .....god blesss and give speedy recovery to ever baby here and their family......thankyou......

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November 20 at 11:18am · Report
Heather McElyea

Heather McElyea Our daughter was born 9/19/09 and had Type C TEF. Her surgery went well and she was home within 2 weeks. She is nursing, but seems to eat seveal smaller feedings than I remember her older sister doing. Does anyone have any feeding stories to share? Do TEF babies get tired more quickly since it is harder to perform ...the motion needed to nurse and therefore nurse more often? Thanks for any advice or information!

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November 12 at 4:18pm · Report
Heather Grigoriadis
Heather Grigoriadis
Hi Heather - My son, Alex, was born 2/26/09 and also had type C TEF/TA. Other than some feeding issues, reflux he has done well so far with no dilations needed. We were told in the NICU that feeding, at least at first, does take them more energy than a normal baby because they are learning to coordinate muscles etc that is not as natural. He ... See Morewould tire out and fall asleep during feeds in the NICU and had to be on a every 3 hour eating schedule 24 hours a day which we are still on during the day because even though he does pretty well, we still can't consistently get the amounts. It might be reflux as well which makes it more comfortable to eat smaller amounts...is she on any reflux or motility meds? Alex had a hard time learning to eat in the NICU, always falling asleep during feeds (the tiring out thing), then did pretty well when he came home, then we had a period where it was just AWFUL but esophagus scans came back fine, added carafate, increased prevacid dose, got on bethanochol (sp?) and he did much better. He's slowed down a bit now, gets the formula but takes 45--60 min...tell me what else would be helpful to know. the drs told us to be persistent with feedings even when he was trying to refuse it and seemed uncomfortable...hope this helps!! good luck & hang in there!!
November 19 at 6:56pm
Katherine Farrell Korsak
Katherine Farrell Korsak
My little guy Elijah also had a C TEF but he also had the H type, very rare to have 2, he was NPO for 50 days. Once we got him home he started to nurse. He is now 7 months old, still nursing great, but he does eat more often than other babies and I think this is because it is easier for him to digest and less likely he will get reflux.
November 21 at 8:50pm
PAuline Croning

PAuline Croning I was so thrilled to find this on FB.. in hopes to get some advise support ect ect.. my nieces child was born with TEF and a premie she had the sugery the next day stayed in childrens hospital for several wks..she is 4 months old now she still has the feeding tube..(in her nose) she is the hospital at least once a wee...k to have the tube put back in the right place..the baby has a horriable cough.. and she seems to be in pain always.. it just breaks my heart.. she seems like such a sad baby :o( she is very frustrated, she keeps tellin the dr she thinks there is something more wrong with her.. I guess we just need help & guidance

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November 10 at 11:16pm · Report
Lori
Lori
Have them check her treacha as well, out son was born two months early with TEF/EA and fixed 2nd day of his life. It was not discovered until 2 1/2 months later that he had severe trachomalcia, another thing that will cause the cough is the reflux, out son had a feeding tube through the nose but still had the potential for reflux, he was on ... See MoreProtonix and Regelan to help break the food down faster and keep the reflux in check. Stick to her gut instinct as we did the same thing! If we had listened to the drs our son would have had a fundo for his reflux vs an aorta pexie to stabilize his airway. You can also visit us at brandonmsrun.com for more info.
November 14 at 11:53am
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.

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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!
November 8 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

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!!

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November 5 at 8:40am · Report
Lori
Lori
Did they prescribe regalan to help break the food down faster? We had Brandon on that until about 18 months since he was mainly on formula. We also played around with the formulas until we found one he tolerated really well. Another thing we did was put a couple teaspoons of baby rice or baby oatmeal in the bottle to help thicken it a little to keep it down better. It's really all a mix bag of trial an error until you find something that works well.
November 14 at 12:01pm
Katherine Farrell Korsak
Katherine Farrell Korsak
Maybe you should try Prevacid?
November 21 at 8:54pm
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

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!!!!
November 6 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

October 29 at 5:26am · Report
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
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
Erin
Erin
Hi Meredith! I just added you as a friend. Thanks for your support!
November 20 at 2:57pm