January is an important month, not only because it’s the start of a new year. But also, because it is EA/TEF Awareness Month. If you’re not familiar with that jumble of alphabet soup, this article by the folks at www.bridgingthegapofea-tef.com will satisfy your curiosity.
Why is EA/TEF Awareness Month important to me? Our son was born with the condition almost 28 years ago, and it changed our lives!
Facts about EA/TEF (OA/TOF)
- In long form is called Esophageal Atresia and Tracheoesophageal Fistula.
- Is an abnormal or non-existent connection between the esophagus and the stomach.
- About 1 in every 3,000 to 5,000 infants is born with one or both of these conditions in the United States each year. WORLDWIDE: It is suspected the occurrence is roughly 1/4,000 live births since there has not yet been any genetic or environmental factor found to date.
Diagnosing EA/TEF
In most case EA/TEF is not prenatally diagnosed. OB/GYNS can determine diagnosis by the following:
- No or small stomach/no stomach bubble
- High levels of amniotic fluid
- Linked to vessel cords (2Â vessel cords)
Links to Other Birth Defects
Up to one-half of all babies with TE fistula or Esophageal Atresia (TOF) have another birth defect.
- Trisomy 13, 18, or 21
- other digestive tract problems (such as diaphragmatic hernia, duodenal atresia, or imperforate anus)
- heart problems (such as ventricular septal defect, tetralogy of Fallot, or patent ductus arteriosus)
- kidney and urinary tract problems (such as horseshoe or polycystic kidney, absent kidney, or hypospadias)
- muscular or skeletal problems
- VACTERL syndrome (which involves Vertebral, Anal, Cardiac, TE fistula, Renal, and Limb abnormalities)
About one-half of children who had esophageal atresia (TOF) repaired will have problems with GERD.
*Statistics Source:  Children’s Hospital Boston
We Need your Help!
Help us to raise awareness regarding this rare birth defect. To learn how you can help visit the Bridging the Gap website.
Brief background of the Periwinkle Ribbon
The Periwinkle Awareness Ribbon is used to represent a number of health conditions and social issues. Why Periwinkle?  Periwinkle signifies esophageal cancer and GERD, two items our children are at risk for; the white signifies the innocence of our children and young adults.
What’s Your Experience with EA/TEF?
If your family or someone you know has been affected by EA/TEF, share the story in the comment box. And be watching for more information about EA/TEF throughout the month of January.
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Virginia, thank you for introducing us to Rebel. He sounds like a fighter and a survivor and so does his momma. The EA/TEF community is rejoicing with you about his recovery and growth. Stay strong, little Rebel!
My son Rebel was born February 27th 2018 at 37 weeks via crash c-section. He has type c ea/tef with VACTERL association. His defect was repaired on his second day of life. We were lucky to have had a probable diagnosis before birth and were able to “prepare” for his arrival.
He spent 38 days in the NICU. They were the longest days of my life. At first, I hated myself for bringing so much pain upon an innocent soul and I told my son through heavy tears that I could accept his loss if he needed relief. But, I prayed he would pull through. I prayed hard.
We went through many turbulent times. He was on TPN for over 30 days and completely unable to eat. During 18 of his days in the hospital we were unable to hold our son. That was excruciatingly painful for me and I can only imagine how much worse the experience was for him. He had a leak in his repair site. Luckily it healed on its own within a few weeks. And finally the chest drain was removed and we were able to embrace.
Doctors then decided it was best to place a g-tube. Thankfully we were able to achieve full oral feeds before being discharged. Not too long after discharge and having had plentiful complications with the button, I was able to convinced his surgeon to remove the tube all together. It took some time but, the site healed up nicely.
I could go on and on.. but the short and sweet of it is: my brave little boy is almost 5 months old now and doing better than I or his doctors could have imagined. We are so very grateful and so very thankful. He eats normally and is exclusively breastfed.. days can get tough.. Overall he’s such a happy child. We’re the luckiest parents on earth to have the privilege of being his guardians. Momma loves her little Rebel. ♡
Sakar, I am so sorry to hear you lost your baby. It had to be so, so hard to say goodbye to your beautiful daughter. As far as I know, EA/TEF is usually not genetic. However, I encourage you to visit the EA/TEF Family Support Connection website at http://www.eatef.org. It has many resources to read which should answer your question and ease your mind concerning more children. Praying for you, Jolene
My first baby was born with TEF/EA on 31st dec 2017. We live in a too rural place in India to treat the desease and lost her on her second day. I am totally broken now and afraid of conceiving another baby. Kindly give me your valuable suggestion on if there are any risks of other pregnancies related to TEF/EA or not.
Stacy, your daughter and her young family are blessed to have your support on this journey. Please come back and let us know about how Noah is doing. He sounds like a very resilient, strong boy. Jolene
My grandson Noah Frank Campo was born September 12, 2017 we never once gave any thought that he’d be born with any birth defects. But, as he was born there it was! Noah had what appeared to the absence of both radius bones. We were of course stunned by this news. As we waited to hear more about this. We were handed the next news. He had something that none of us had ever heard of before. As the Doctor explained what she was thinking, I asked her to please stop and write it down for me. She did and of course I started to google it. I couldn’t believe what I was reading. Then the next news came. Noah had to be moved to Children’s Hospital here in New Orleans. My husband and I decided to go with Noah.
We knew that he would need surgery the next day. My God..I was in shock. How did the doctors miss this?! Is the first thing that comes to mind. Noah makes the 25 minute ride to children’s. I settled in for the first night of his life with him. The next day we get ready for his surgery. Still very confused we prepare for him to go into surgery. Everything goes well. Two weeks later Noah is coming home. Finally we all feel as if we can breathe. A short lived victory. Fast forward almost three months. We are looking forward to Noah’s first Christmas. Well, Noah spent his very first Christmas in the hospital. Due to complications from the EA/TEF. As I sit here today Noah’s 4 months old. He is currently in Boston’s Children’s Hospital.
Tuesday January 16th Noah under went surgery under the supervision of Russell Jennings. Dr. Hamilton preformed his surgery. Noah had posterier Trachapexy surgery (sorry about the spelling). He did great. Today he is 6 days postoperative. He is breathing on his own as of today he’s vent free. But, once again we are holding our breath to see if he’s in need of another surgery or not. I’m home back in New Orleans after a 2 week stay in Boston. Our children’s stay however will be in upwards of 5 more weeks. This is the recovery time frame for Noah. He also has VACTERL ASSOCIATION. He has a list of genetic abnormalities. For once in 4 months I can say that we have a much better understanding of what the world of EA/TEF really means. It’s so rare that it’s staggering. His mother was finally able to hold him after almost 6 long weeks. I have to say that was one of the proudest moments in my life.
Dear Kevin, Thank you so much for introducing us to Max. I am so glad to have met him, and I’m sure Different Dream readers are too. My sincere sympathies to you and your family for you loss. May the memory of his short life bring you great joy! I’ll send some resources to you via email. Jolene
My Max was born on Wednesday and diagnosed with EA/TEF. Maxwell Chance McBride was born 10 weeks early. Weighing 2.4 lbs, Max turned out to be the best pound for pound fighter to ever inhabit the planet. He brushed aside his prematurity in a way that baffled nurses, doctors, and surgeons. When they disturbed his naps, he yelled louder than any full-term baby (coddled nerds). 40 weeks, shmorty weeks. Pre-surgery # 1 to detach his trachea and connect his stomach to his esophagus, his wavy blonde hair had the NICU nurses swooning. He fought through that first surgery like a champ. He fought like mommy did to break out of a different hospital 1 day early to trek all the way across the city to get to him with her post-C section stomach stitched together fresh off being diagnosed with HELLP. Max did his part. Only a surgical error, whose full ramifications were not realized for hours, stacked the odds too high. During the EA/TEF, the surgeon mistook his downward Aorta for his esophagus and cut it open and restitched it before locating the actual esophagus and completing the repair. This resulted in a severe lack of bloodflow to my little champ’s lower body. The doctors did not realize it was his actually his Aorta until the next day. They thought it was just a “vein.” After the realization, Max the moose battled for hours through emergency surgery # 2 for his heart before it became too much in recovery on Friday. The pain of this loss is killing me and i want to research and help all things EA/TEF-related.
Hi Jazmin, our children are gifts from the Lord, aren’t they? I’m so glad you see your daughter’s condition in such a positive light. Thank you for sharing a little about her. Jolene
My daughter is one year old. She had type B EA/TEF and had surgery a day after she was born. She was diagnosed with VACTERAL Syndrome and Turner Syndrome while she was in the hospital after surgery. This past Tuesday she was also diagnosed with craniosynostosis, which was being confused with positional plagiocephaly, and is scheduled for surgery in February. My baby girl is such a happy baby. I love her so much and I know she will over come all her obstacles. She has been diagnosed with multiple things, all of which are rare for the conditions. I know she is an angel sent from above and I am grateful for having her in my life.
Hi Petra,
Congratulations on greeting little Easton to this world. He has had an eventful life so far, and I empathize with you as the parent to this scrappy little boy. You will find great support and answers to many of your questions at this Facebook page for parents of kids with EA/TEF. (https://www.facebook.com/groups/157730937619916/) If you haven’t yet joined FB, I encourage you to do so. These young parents are in the thick of what you’re experiencing or have emerged on the other side. Also, if you are not from the US, do a FB search of EA/TEF to find similar groups around the world. Best wishes and feel free to send an email directly to me with private questions. Jolene
I am beyond thankful that i found this website. Our little Easton was born with type C TEF with complications from tracheomalacia. He under went surgery at 1 day old and was home in 11 days. He is now 4 months old and weighs 14 lbs. He is my little trooper! We now are going threw therapy to correct tortocollis on the right side of his neck and battling the 4th round of croup. I have so many questions and not a lot of answers. Please help!
Makalani, he sounds like an amazing little boy. I’ll be praying the esophageal issues resolve soon and he can eat by mouth. Thank God for feeding therapists who can make that reality possible for children like your grandson. Jolene
My grandson was born on March 8th 2015 with EA/TEF. He underwent surgery at 2 days old. What we thought would be a fast recovery went terribly wrong. He had a leak in his lung and on day 9 was rushed into emergency surgery to fix the leak. They put a catheter in him in case he needed to be on ECMO which I learned was basically life support. He came out of surgery alright then turned for the worst. He ended up on ECMO which supported his lungs to give him time to heal. 1 week later his body started to reject the machine so they needed to do a swap. It took 2 minutes to swap machines and within that 2 minutes he had a cardiac arrest. 45 minutes of no heartbeat and preforming cpr on his already fragile body. God spared his life. He was then put on lung and heart support. He spent 28 days on ECMO. When he came off he still needed to be on a ventilator. Later he went to a trach which eventually all came off. During this whole ordeal he was given a gtube in order to feed him. 6 months old he was released from the hospital. After 7 surgeries, his EA/TEF was finally corrected. He still needs to dilate every so often. He is now 13 months old and thee happiest little boy I know. He still doesn’t do much oral feeding and gets total nutrition through his gtube. He’s been throwing up a lot so we kinda hold off on the oral feeding. I can’t wait til he can eat on his own. He’s my little warrior.
Elizabeth, I am so sorry about the loss of your baby. What is her name? Your worry about having another baby is understandable. I had the same fears, and my husband and I went through genetic counseling. They found no genetic link with our son’s EA/TEF and said we had no higher chance of having a baby with medical issues than any other parents. If you are on Facebook, do a search of EA/TEF and you will find some parent groups to join. You could pose your question there, too, and get feedback from a wider group of parents. Again, my condolences for your loss. I’m crying with you. Jolene
Hi, it is so encouraging to see that I am not the only one who has struggled with this defect, my baby was born with esophagus atresia last year in july, I am from Zambia so the health facilities are not up to date, and hence making it difficult for them to deal with such issues, they operated on my daughter at 3days, but then they could not do much for her apart from inserting a tube for her to feed direct to her stomach, after five days she started bleeding severely and they had to do a blood transfusion, the following day her body swelled and she started having seizures she later passed on on the 31 of July. I am scared of having another child because of my past painful experience, I am only 25 years, are there woman who have had health babies after such experiences? Thanks
Dani,
Your son’s story sounds so much like what our son went through. You are so right about needing a pediatrician who knows about EA/TEF. I hope you’ve found one! Jolene
What a wonderful site!!! I came across your site as I was looking for information in regards to long-term effects of TEF related to common colds and frequent respiratory issues. My son just turned 8 and had a TEF repair at just 2 days old. The surgery went extremely well and after just 10 days in the NICU at St. Mary’s Hospital in Richmond, VA he was able to come home. For the first year he had a major acid reflux problems which resulted in projectile vomiting if had any type of formula that was premixed. He was on breast milk for about 2 months and then my body stopped producing milk so we had to switch to formula. He hasn’t had any other issues with acid reflux since switching to solids around the age of 2 or so. The issues we face now are the frequent respiratory issues and colds. By the time he was 4, he had pneumonia 6 different times in which 1 ended in a hospital stay. Fast forward to 8 years old, and things have slowed down with the number of times sick per year. However, when he gets sick it most likely turns into something worse than just a regular cold. I think it’s extremely important to have a Pediatrician that understands EA/TEF repairs because it will assist in a quicker resolution for when the child is sick.
Hi Paven, Thanks for your note. You might want to join some FB groups for TOF/EA and post your message there. They get lots of traffic from parents. Go to FB and search for EA/TEF, EA/TOF, and TOF/EA to find them. Best wishes! Jolene
Hi any couples from India who have babies born with TOF/EA ?
Pl write to us. 84.pavan@gmail.com So that we can discuss on which hospitals are best to treat etc ,,
Look forward for ur reply
Thanks
Pavan
Mad just turned three and is still the greatest kid in the world.
http://www.mikemccrory.ca/madisthree.png
Although she was just diagnosed with scoliosis, we couldnt be luckier to have such a awesome girl. She got caught up last week on french fries and chicken and were kind of suprised because its been at least 7-8 months since something like that has happened. No biggie though for her…she worked it down and was all good.
Fave foods now are, cut up grapes, quinoa with feta, PIZZA and granola bars.
Kanu,
Good to hear from you and of your baby’s recovery. You can meet lots and lots of EA/TEF parents on Facebook. Type EA/TEF in the search box to find groups and then ask to join them. You will find parents able to answer many of your questions and support you and your little boy.
All the best,
Jolene
hi all . i m a proud mom of 5 mnths old baby boy born with tef .he under goes his surgury when he was 1 day old. and been dere for 14 days for recovery. on ventilltor as well. but now hes home and doing good except for colds nd cough hes been up for 4-5 dilatation till now. also he gets antacid medicine twice a day. slept on 45 degree angle . v are praying for his good health in future also. anybody else ?
Oh my, your fear is perfectly understandable. If you are on Facebook, you may want to search for EA/TEF groups and join them. There’s lots of suppor thtere. Please come back and leave a comment with progress reports when you can. Best wishes and prayers to your family!
My daughter is 17months old with TEF, no surgery yet because we’ve not been able to do Barium test. She’s been in and out of hospital. She’s H type. My wife and I are scared.
Amber,
I’m so happy to hear Lukah is doing so well. He’s blessed to have a mom who loves him and is advocating for him. Come back after his IA reversal with an update please. And if you are on Facebook, do a search for “EA/TEF’ and join some of the support groups there if you haven’t already. Some of the moms will be able to offer sound advice about some of those feeding issues.
All the best,
Jolene
My name is Amber and I had a son wit EA/TEF and Vacterl he is 7 months old and had his ea/etc reversed at just 12 hours old. He was born wit IA and also has tethered a spinal cord. I was told I through whole perfect pregnancy I was going to have a healthy baby boy. After being in labor for 15hrs and already had broken 2 water bags my son Lukah was still sitting in a 3rd bag of water. Within a hour after breaking my 3rd and final bag of water out came my beautiful baby boy! We automatically knew something wasn’t right when I was told he had “no butthole”. After less then 5 mins of being on my chest he had stop breathing. I knew something else was wrong after listening to him breathe. Well that’s when they discovered the EA/TEF. My world turn upside down and my son was rushed to another hospital All Childerns to be exact. He had his first major surgery. Those 6 long hours were horrifying. Now my son his the happiest 7 month old and will be having his reversal for his IA in about a month and half. We still have problems wit him eating and him chocking but things are looking up and I’m one proud mommy of a EA/TEF Vacterl baby!
Nalin, I’m so sorry to hear of your daughter’s early struggles. I sent a private email with more information. Feel free to email me any time, and I encourage you to join 1 or more of these FB groups where other parents can offer support and advice:
https://www.facebook.com/groups/157730937619916/
https://www.facebook.com/groups/49652608806/
https://www.facebook.com/eatef.org
Stop back with updates if you can!
It’s always so great to hear success stories like Madeline’s. From the sound of things, she has great support from her parents. You are doing such important work with her. And she is adorable!
Update from 2 years ago!!! Madeline who was born full term, Type C, short gap is thriving. When she was a baby I would always search at success stories for this and people who had children that eventually got through the weeds and gave hope to people that thought there was none.
Mad turns 3 this year and she is basically a normal kid. We are still cautious with foods and find alternatives for alot, i.e., hard pizza crust, grapes, you know big things or things that wouldn’t go down as easy, but eats a lot of different stuff and hasn’t had acid reflux since she was prob 6 months. She now know when she is caught up and it eventually goes down after walking around a bit and maybe a sip of water. Her fave meals right now are prob, Egg salad sandwiches, Pancakes, strawberries, cucumbers & Mac and cheese << of course. Anyways like I said she is a happy normal kid and the only thing we all dislike is the cold winters that make her colds pretty bad but we get though it! Heres a pic of the greatest kid ever.
http://mikemccrory.ca/mad.jpg
My daughter is 7 days now and underwent surgery within 24 hours of birth. She was stable for a day but then caught up by pneumonia and lung infection. She collapsed couple of times owing to this infection. Her heart rate is comparatively higher and she has been put on ventilator for last couple of days. Any advice and long term comlications?
Thank you Jolene and Kristin for the quick replies. I am following up with the contacts you have sent and also on facebook, i hope to cure my daughter soon.
Regards,
Saraswathi
Saraswathi, contact Dori at the number here: http://www.childrenshospital.org/health-topics/conditions/esophageal-atresia
At the VERY least get the records to Boston for review and second opinion. Most everything can be done telephonically before you move your babe. Good luck!!
Hi Saraswathi,
Thanks for your question and congratulations on the birth of your daughter. I am not qualified to answer your question and suggest that you ask your question to some EA/TEF groups on Facebook. There are hundreds of parents there who have had to make the decision you’re facing and can answer you. Here are a few of them. Many are closed groups, so you will need to ask to join:
US Bridging the Gap: https://www.facebook.com/groups/157730937619916/
Kids Born with EA/TEF: https://www.facebook.com/groups/49652608806/
Best wishes to your family as you search for answers.
Jolene
Hi,
My daughter was diagnosed with long gap esophageal atresia on birth. Now she is 8 months old and lives on feeding tube. Our surgeon said the gap is too long to be corrected in the first surgery. He would be performing the second surgery when she is one year old so that she is strong enough to withstand the surgery. He said one of gastric pull up or esophageal replacement using the stomach or intestinal tissues would be performed. I also read about the Foker’s treatment in Boston. Could someone please tell me which is the best way to treat long gap ea ? This is my first child and really depressed to see her this way. Please help.
Hi Valerie, thanks for the report about your daughter. How wonderful that her repair and recovery have gone so well. Being tiny is quite common for EA TEF babies in their early years. Our son weighed just 16 pounds at a year and only 27 by age 3. But he’s grown now and doing well. The best things come in small packages! Jolene
My daughter was born with a TEF & VSD which is the small whole in her heart. She has surgery the day after she was born. She was 4lbs 8oz when she entered this world. I was so scared when they took her into survey but I’m so happy they did. She is now 4 months old (almost 5) and is the happiest thing..but super tiny, she weighs 10lbs 6oz feeding her can sometimes be difficult but patients is key. I thank god every day that she’s alive and here with us today !
Hi Susan,
Are you inquiring about diets for 1-year-olds with EA TEF repairs? If so, my answer is to start with thickened liquids and then progress to foods like applesauce and other purees as the child can handle them. Be sure to introduce all foods one at a time to test for allergies, especially milk products. They tend to produce mucus in all kids and the problem is compounded when a child has allergies. The mucus can make it hard for food to get through the repair scar stricture. That said, my advice is 3 decades old. I suggest you to to Facebook, ask to be part of the US: Bridging the Gap of EA/TEF group, and pose your question there. You’ll find parents with more recent experience who may be able to answer your question better than can I.
Best wishes,
Jolene
I’m just a worried Grandma … is there any “special” diet/foods for a ONE year old?
Dear Eunice, your concern is understandable. Our son weighed only 27 pounds on his third birthday, and eating was a challenge until he was almost 4. The best place for you to find advice is at one of the EA/TEF Facebook parent groups. You can post questions there and other parents with kids your daughter’s age will respond with ideas. (My son’s now 32, so many of my ideas are outdated!) Here are links to the groups:
US: EA/TEF Bridging the Gap–https://www.facebook.com/groups/157730937619916/
Kids Born with Tracheoesophageal Fistula & Esophageal Atresia: https://www.facebook.com/groups/49652608806/
Kids Born with EA/TEF: https://www.facebook.com/groups/192029334173118/
Here are a couple websites that might offer help too:
Bridge of Hope: https://bridgeofhopeea.wordpress.com/bridging-the-gap/
Boston’s Children’s Hospital: http://childrenshospitalblog.org/teaming-up-for-tef/
I hope that helps. Please let me know if you have future needs.
Jolene
Hi my daughter was born with tef she had the repair do with two days old at 4 lbs I’m still learning she is two now still can’t eat normal they have done tests and said everything fine but she still has days that she can’t keep nothing down I really need advice or can tell what I can do you’ll my baby girl she only weighs 24 lbs at 2
Dear Brandy,
I’ve never heard of a baby surviving this birth anomaly without immediate surgery. What kind of EA/TEF was it?
Jolene
My son was born undiagnosed and we had a rough first year til I demanded a ENT specialist and discovered he had TEF and under went surgery 5 hrs away at special hospital at age 1.5. He didn’t have any issues til now at age 6.5:( back to long drives and test. Good luck to all I know how hard it is.
Brandy later sent the following explanation of her son’s EA/TEF variation:
I had a rough pregnancy with my son Ethan went into labor at 24 weeks and they stooped it and gave steroids for his lungs. I also had a excessive amounts of amniotic fluid. He was born at 39 weeks 9 lbs 2 ounces. He had a very rough 1st year of life with pneumonia every month, Doctors blamed it on asthma in which he does not have. I demanded a ENT referral and they sent us 5 hrs away to MUSC Charleston SC. The doctor there Dr. White knew right away but still did barium test and endoscopy and it was TEF. He described it as a zipper and in middle of zipper was a big gap where food and liquid was getting in my son’s lungs. He had TEF repair at age 17 months. I stopped going to specialist at age 2 with him it was a huge financial issue. Now, at age 6 my son has showed signs of respiratory illness, cough, eating difficulty and we where referred back to MUSC we go this Thursday and I’m very nervous of what to expect now. Thanks for your concern.
Dear Sandhya,
I am so sorry to hear about the loss of your sweet baby boy. Please don’t think that you did anything to cause it. We thought the same thing after our son was born (we also had no idea beforehand) even though we were both healthy. We even went through genetic counseling before trying to have another child. The doctors said we had no risk factors. EA/TEF occurs in about every 5,000 births, and it just happened to be our baby. Another doctor said that when the trachea and esophagus are forming, they are each less than the diameter of a pencil lead. One missed signal and something can go wrong. We now realize that the true miracle is that so many babies are born without birth defects!
You would probably benefit from meeting other EA/TEF parents and telling your story at this Facebook group: https://www.facebook.com/groups/157730937619916/. Also, you can learn more about EA/TEF at this site:
http://bridgeofhopeea.wordpress.com/bridging-the-gap/
Again, I am so sorry about your loss. I’ll be praying for you.
Jolene
Hi jolene,
Am sandhya ,I lost my baby boy at 31 weeks it was an abnormal delivery.i never heard about TEF or EA .He had undergone surgey after 24 hrs doctors said surgery went well but my boy didt heal and lost him on 11 day despite of intensive care.We are helpless not knowing the reason behind defect which was not caught even in ultra sound.Am really depressed me and my husband both of us are healthy but still not knowing why my baby got the defect.can you pls share us any info if you know the reachin behind.He is my first child all this happened on Aug 8 2014.
Sandhya.
Sara,
Congratulations on the birth of your son. I’m so glad to hear he recovered quickly and is doing well and that you found hope here at DifferentDream.com. You may want to join an EA/TEF Facebook group. They are good places to ask parenting questions of people who’ve been where you are now. Here are a few to consider:
https://www.facebook.com/groups/49652608806/
https://www.facebook.com/groups/157730937619916/
Praying for your family,
Jolene
Hi, my son born with type C EA/TEF full term baby 2.5kg second day did surgery,
After 15 hard days of NICU we bring our princess to home.
Now he is 6 months old, he is very doing good now,
But some times he coughs a lot and whenever he start to cry make some junky sound
We are very scare about him future, every day we are praying for his
Good health in future, after my long search internet about this issues,
Iam feel comportable here..I can see some hope here..
How wonderful that things are going relatively well. Things have advanced so far from the mid-1980s when our son had similar issues with food getting stuck. That camera sound like a great thing!
My 13 month old daughter was born and diagnosed with EA/TEFthey repaired it at one day oldand she is been living very happy and healthy she weighs what a normal 13 month old weigh but she just recently had a one year check up and they said she has a small shelf where the surgery site. That gets her food stuck in it so it causes her to make yourself throw up because of the discomfort so now she has to have her throat stretched it’s a small surgery where they put it camera down there and look at The surgery site and then they put a balloon in there and they stretch the throat and they’re hoping that she’ll be fine after that then its just regular yearly check check ups.
Thanks for the link to EA/TEF medical history. I used it to make a flyer with my son’s picture to email our family and friends and raise awareness this January. Many were shocked to read that an autopsy record in the 1600s noted EA with TEF.
Hi Linda,
Hooray for your little fighter! She sounds delightful. And her story sounds very similar to others. To communicate with other EA/TEF families, Facebook is a good place to start. Bridging the Gap offers a large community at https://www.facebook.com/groups/157730937619916/. Also if you type EA/TEF in the Facebook search bar, several others (some international) will pop up. The parents do a lot of sharing/trouble-shooting, so see what you think!
Jolene
My daughter, one of B/G twins, was born with TEF/EA 7 years ago. Born at 32 weeks, she remained in NICU for 5 months with 5 inpatient surgeries. She was on an apnea monitor, G-tube pump and heart monitor when she was released home. Within a month she was off G-Tube feeds. ASD/VSD (Heart) closed on its own within 2 years.
She is a very bright, precocious child who loves art, animals and ballet.
Our greatest challenges are respiratory….dx of chronic lung disease with lower respiratory issues during winter months. Also reflux issues.
Interested in communication with others.
Hi Maggie,
Thanks for sharing your story and the link to your children’s book. It’s good to know that Lois is doing well now after that rocky start. Your book is a wonderful idea. Thanks for writing it once the EA/TEF parenting craziness went away.
Jolene
Hello,
My daughter Lois was born with T.O.F./O.A. in Tanzania 10 years ago. We are British so we flew back to the UK where she underwent her operation at 3 days old – which thankfully was successful.
We returned to Tanzania when she was 4 months old as she was thriving, but the good health didn’t last. The first few years of her life were very traumatic, with chest infections, pneumonia, and a lot of swallowing problems. Twice she was given a barium meal to see if she needed a dilation, but both times it was decided that she didn’t. 5 times she has needed surgery for food blockages.
I found the “knock on” effects of T.O.F. really hard too – the insensitive comments people made when they heard her cough, her own questions of “why am I different?” and the fact that I gave her more attention than her sister – because she couldn’t survive without it! Even the stress of my husband wanting to go out to eat, and me not being willing to have Lois eat in a restaurant because I couldn’t control her food intake there, and she would inevitably vomit in public.
By the grace of God we survived the years and now Lois is a healthy 10 year old. Wow. I wanted to glean something useful from those stressful years, and encourage other families who are still going through similar problems. I wrote a children’s book which is available at http://www.lulu.com search books then My Family and T.O.F. . I really hope it can help and encourage other families out there.
Hi Linda,
Thanks for the question. How wonderful to hear you are doing so well. Your story will give many younger parents hope.
To answer your questions: I’ve not heard of the cardiac issues before, but the stomach issues are very common for EA/TEF survivors. To ask a larger group that may have more answers, visit these Facebook groups and post your questions there:
https://www.facebook.com/groups/49652608806/
https://www.facebook.com/groups/157730937619916/
https://www.facebook.com/groups/192029334173118/
If you think of it, come back and share the information you receive here. Best wishes!
Hello I was born with ea/tef type d 38 yrs ago. I had surgery the day I was born. I was born 3lbs . I was curious if any surviors were dx with cardiac problems as adults ? I lead a normal life married , two children , both normal pregnancies . No problems , but at the age of 31 I was dx with cardiomyopathy and I have constant stomach issues . I was curious if any other survivors have been afflicted with the same or similar issues .
Thanks
Linda
Dear Laura,
How wonderful to hear about your daughter’s successful surgery and amazing recovery. You have been blessed with a wise surgeon, and I agree with his recommendation to wait to introduce solids and stick to pureed foods until after age 2. If only we had had that option! Do come back with updates now and then. TEF success stories mean a great deal to parents.
Jolene
Our little girl had TEF type C, surgery on day 1, two weeks in the NICU and has been doing amazingly well ever since. We give her zantac twice a day, but she hardly ever spits up and has only vomited once (and that was most likely from the bouncy chair). Our surgeon is keeping her on formula only (she was on my expressed breast milk for the first month and then an infection messed that up) but she has been thriving on formula and weighs 16 pounds and is nearly 27 inches! She’s a huge 4 month old. Just wanted to say: our surgeon strongly believes in only giving TEF babies breast milk or formula for the first year–he says many problems are caused by introducing solids too early. So we are waiting until 1 year before giving her pureed vegetables and fruits and will keep her on ONLY pureed baby food until she’s 2 at least. I’ll report back how that goes, but wanted to let folks know that according to our surgeon (who has 30 years of experience with TEF), he feels strongly that introducing solids too early is bad for TEF babies.
thanks so much Jolene!
Mike,
The best place to have those questions answered will be at the EA/TEF groups on Facebook. Here are a couple links:
https://www.facebook.com/groups/157730937619916/?ref=ts&fref=ts https://www.facebook.com/groups/192029334173118/?ref=ts&fref=ts https://www.facebook.com/groups/Tofnoises/?ref=ts&fref=ts
Best wishes and keep us posted on how things go.
Jolene
Thank you…she’s definetly a keeper.
We are going to introduce solids in December so if you or anybody on this site has any suggestions for foods that would be great!!!
Madeline. Is. Beautiful!
Hi Jolene,
Her name is Madeline. She’s a beauty! Yes I think she had best case scenario EA/TEF, with her being a full term baby and the gap being so short. The surgeon operated under her armpit and she also has a drainage tube scar. We give her Acid Reflux medication twice a day for the first 6 months of her life, after that the surgeon said the site should be fully healed by then.
As far as other defects she has, nothing really just two different ears, one slightly bigger than the other and a little skin fold in the corner of one eye, you would only see it if you really looked. I posted some pics of her from the beginning of her life to today to look at everyday from work, to remind me how lucky we are to have her.
http://www.mikemccrory.ca/madeline.html
Hi Mike,
Thanks for telling about your little girl. What is her name?
Her surgery sounds like a best case scenario. She’s doing very well, and the coughing is quite normal. You might want to join the FB group called “Bridging the Gap.” Lots of good information there if you need it, though many of the parents there deal with children with more complications than your daughter had.
Keep enjoying her and don’t worry too much about the future. Our son’s situation was quite similar to yours (though he had a few more bumps upon the road), but he’s doing well now. 30 years old, a wonderful husband and a devoted first time daddy. We never would have believed that was possible way back when, but it’s true!
Jolene
Our daughter was diagnosed with EA/TEF type C the night of her birth (weighed 7.9lbs) and flown to NICU that night for surgery which occurred on day 3 of her life. We were devastated to say the least.
Surgery was a complete success, the doctor said since she was a full term baby bridging the gap was very close so it was best case scenario for that type of surgery. She stayed in the NICU for 2.5 weeks after that.
Finally we got to bring her home, she coughs a lot which breaks our heart but loves her moms milk and she in now 4 months old and weighs 15lbs.
We put her to bed at 8pm and she usually gets up around 3am to eat and them back up at 7am. We are worried about what the future will bring if any other problems, introducing solids, possibility of scoliosis etc.. But for right now she is our little angel and a loving every moment with her through sleep deprovation to cuddle time on the couch.
Brittany Clark wat procedure was done on your baby to correct the condition? my little girl has ea/tef with a long gap, now we’r using gastrostomy button to feed her. Here in India docters say about gastric pull-up and reconstructive surgery. Anyone can also has got any reconstruction done. Please help, as we are very confused and worried abot my small baby.. she s such a cute lovely girl and we want her to be fine.
Hello, Lynne,
Welcome to DifferentDream.com and to life as a EA/TEF parent. How wonderful to hear of Lillian’s quick initial recovery. Please stop back with news about what the genetic tests reveal. Just like the EA/TEF community, you will find communities for whatever Lillian and you will deal with. Remember, you are never alone!
Jolene
My daughter Lillian was born with EA/TEF and had surgery at one day old. Luckilly for me we live very close to one of the best Children’s hospitals in the country. She recovered and was out of the NCIU after 11 days. She is a fighter just like all these other kids, and I am so amazed that there are so many of us. This is one of those things nobody warned me about.
Today the Dr. called and said there are some things with her genetics to look at, and while she doesn’t have Down Syndrome there are some markers that could cause problems. I am worried about that, but hopeful that all will be OK.
God never gives us more than we can handle, I just sometimes wish he didn’t have so much faith in me! God Bless us all, and our little ones.
Dear Sue,
Wow, you and your daughter are going through a lot right now. I remember how difficult those NICU days can be.
Our son’s initial EA/TEF repair was done 30 years ago and his Nissen was 25 years ago. (It lasted for 10 years and helped a great deal at the time, but it compromised his stomach enough that another wasn’t possible.) Therefore, I’m not up to date on the latest and greatest innovations. But if you haven’t yet joined any EA/TEF groups on Facebook, I urge you to do so. Most of the parents in the groups have younger children and may have advice for you.
Here are a few links:
https://www.facebook.com/groups/192029334173118/
https://www.facebook.com/groups/157730937619916/
I hope that helps. Please stop back with an update about your little girl’s condition.
Praying for you,
Jolene
My baby girl was born with type C tef/ea repaired. Needed diaphragm surgery, also developed pyloric stenosis. Continues with severe reflux despite repair. Finally breathing better (off CPAP) but hates pacifier now and does not want it. Went for swallow study and she did not want to take bottle but did not aspirate while during exam. HATES BOTTLE, gagged a ton! Everyone is pushing gtube/nissen bc of reflux and not wanting bottle. She is currently on continuous feeds and vomits several times a day. I am sooooooooooooo scared of doing a nissen on her bc she has a very strong gag and retches constantly which can cause the wrap to fail. I have read that EA babies do not do well with nissens. Any recommendations????? I am so scared of making the wrong decision for my baby.
113 days in NICU and counting….
Hi, my 2y 7month old was born with EA/TEF and had a successful surgery at 3 days old. No other complications. the biggest issue is at this age, she does not say a single understandable word. she babbles, understands a alot, she masters the iPad apps for toddlers, but just cant speak. we are doing speech therapy and Occupational therapy, i dont know if any of this is working. we’ve been to see an ENT, and he hasnt found any concerns. We’re on a very long waiting list to see a developmental paediatrician. anyone can relate?
Hi Ginger,
How wonderful to hear from a healthy, happy adult who had a TEF repair as a child. Your story would mean so much to young parents of babies and children still struggling with repair complications. If you’re on FB, type “TEF” in the search box and check out some of the parent groups there. If you like, join a few and tell your story to encourage families who need hope.
Blessings to you and your family,
Jolene
Hi I was born in 1983 and also had TE Fistula and a heart murmur, I didn’t realize so many other people have had this as well. I have been having a healthy and happy life. I also am married and have been blessed with having two children. I know I had great doctors to take care of me during my surgery but most of all it was God answering all the prayers from my family. He is the one who blessed me with life and I praise him for that.
Anu,
Thank you for your comment. What a hard time for you and your baby girl. I will contact you via email with some suggestions.
Jolene
My baby girl has got EA/TEF. she was operated the day she was born, but the operation wasn’t sucessful as the gap between two ends was long to be stitched together. A GA pipe is inserted in her stomach. Dr.s are saying that they will again operate on her after she gains weight upto 8-10 kgs. Is there someone else having same issue? Please contact me @ anu.prisha@yahoo.in
Hi Elisa,
Thank you for stopping by DifferentDream.com. It’s wonderful to meet adults with successful EA/TEF repairs. Success stories like yours are an encouragement to parents in the trenches with wee ones dealing with many complications.
Jolene
I myself have been affected by this, I had surgery to repair it almost 19 years ago (the day I was born). I am happy to say that I am alive and well, living a normal life! 🙂
Hi Jake,
My son’s TEF sounds very similar to yours. He’s 29. How old are you? I’m not sure if he wants to talk about it, but I can pass the message along.
Jolene
Hi. i was born with TEF; however i am lucky to have not been diagnosed with any other defects. i have led a normal life(what ever normal is anyway), i just wanted to hear from others with the same defect an to see if this defect has effected your lives in any way? please contact me. i have never met another person with TEF.
Hi Aimee,
My son was born in 1982, so he’s not way older than you. He battled GERD for years and developed Barrett’s Esophagus so severe that 2/3s of his lower esophagus were removed at age 15.
Currently, he lives a normal life and takes no medication, though he sleeps elevated and has to be careful about reflux and other digestive issues. As he got older, we found the GI team at Mayo Clinic to be much more knowledgeable about esophageal issues than pediatric GI doctors were. They see lots of older people with compromised upper GI tracts and are much more experienced and less alarmist when treating them. I would encourage you to check them out or another top flight hospital known for GI work.
Best wishes to you and fire away if you have more questions!
Jolene
Hello everyone,
I was born in 1990, premature, 5lb and 4oz, with EA/TEF. I had a few other random anomalies such as an artery blocking my trachea, a cardiac sphincter that fails to work, and born with only a single kidney. I’m currently 21 years old and suffer from GERD each day. I came across this website, along with a few others with nice support groups, as I’ve been trying to learn more about serious complications that can occur later in life. I’m currently having more difficulty with my dysphagia and GERD and fear Barrett’s Syndrome in my future. I’ve been looking for more patients around my age group who I may relate to. Many cases I see are younger in age or rarely I see some of the first survivors in the 1950s, but none in between.
Sincerely,
Aimee
Thank you, Jen! I can’t wait to check it out more thoroughly.
Jolene
I found this great site http://childrenandbabiesnoteating.com/index.html it has so much information on kids who don’t eat (like my daughter) and what you can do about it. Just want to pass it on.
Hi, Daphne!
At four months old, Reid may just not be ready for solids – as any 4 month old may not be. It’s totally typical to start introducing solids between 4 months and 6 months. If he doesn’t want anything to do with it, just reintroduce each week until he shows some interest. Also, try other foods. Avocado pureed with breastmilk or formula was the first thing that my son ate at 6 months, and he LOVED it!! Don’t sweat it just yet. Get on Bridging the Gap of EA/TEF or join us on Facebook at http://www.facebook.com/pages/EATEF-Family-Support-Connection/78418175958.
My son is now 1 year old and eats almost everything in sight. My husband and I joke that he’s not happy unless he’s eating!!
Hope to see you around!!
Hi Daphne, Christine’s answer is right on the mark. However we used to put cereal in Brandon’s bottle to weigh the formula down in the belly to stem reflux, we actually started that when he was just a month old. The docs agreed with it and it def help keep his formula down from the reflux. Also let your little one play with the foods first. Feeling the food is a big things for these little ones. The first thing we started B with were Biscuits (of course I can’t remember the name of them) but they were cookies that dissolved quickly and he took to those very quickly. Baby food was another story, he hated all of them! So at some point we went from biscuits to table foods and he was able to handle them al…. I agree with Christine, the food is really secondary, introduce it as you go. Wishing you all the best!
Thanks, Christine!
Jolene
Daphne,
I would invite you to visit the Bridging the Gap site (links are above). We also have state liason’s to help. The support from this online community has been our life line.
Did you just start foods? I know in our case we introduced solids at 4-5 months old. Due to the repair and stricture we diluted them alot with Breastmilk/formula/Diluted Juice or water. Should be soupy looking at first. With our little one’s we have alot of food adversions etc. and also many of them have just mastered the bottle/breast. Remember its a learning experience for the little ones at this age, and in our case it took a bit longer for it to catch on as many of our children didn’t get to eat for the first days/weeks of their lives. I would not put cereal in a bottle unless you’ve been told to do that by your doctor, yet every case is different. As long as Reid is getting his bulk of nutrition from bottles etc the food part is all secondary. Its giving him new taste, and textures. But no worries he should catch on very quickly. Don’t worry if it takes a couple trys or if you need to move on and try a new food then come back to something. I hope this helps. Again, our Facebook family is very helpful. Best of Luck!
Christine
Hi Daphne,
How wonderful to meet you! Surely someone in this group will be able to help. My experience was a long time ago, but we had a hard time getting our son to eat from a spoon, too. I think he had an oral aversion caused by all the dialations, probably 50 of them between 2 and 6 months. My first impression is that 4 months may be early to introduce cereal to an EA/TEF baby. Is Reid getting up a lot at night or acting hungry? If not, give him time. But my experience is 28 years old, so I’ll pass your question along to other EA/TEF parents and see if they have more recent advice. My only other suggestion is to ask the doc to refer you to a feeding clinic. They may be able to help.
Jolene
Good Morning Everyone!
I am so glad I stumbled on this site. My son Reid was born with TEF/EA. I had never heard of this before. He is now 4months old. We have had several dialations because of strictures. The surgeon says this will get better as he grows.They put him on a steroid to assist as well. I tried to give rice cereal in a bowl to Reid on last night and he would not take it like that, so I put it in the bottle. When did you all start to introduce cereal or foods to your little one?
He was a big boy! How wonderful to hear things are going so well.
Jolene
Our son LeeLand was born with TEF/EA, & a small heart murmur.At birth he weighed 6lbs. 11 oz. He had his repair when he was less than a day old. He spent 10 days in the NICU! He’s now 14 months old, & he’s had 10 surgeries minor & major b/c if strictures & GERD. We were having dilations every 2 wks until he had the Nissen Fundolplication done. We’ve now been 3 months w/o a dilation. He’s able to eat just about anything, & it’s truly amazing. He’s a very big healthy boy. He weighs 25 lbs. & 11 oz. & stands a whopping 33 inches at only 14 months of age. Unless I showed you the scars or shared his story with you, you wouldn’t even know he had ever had anything wrong with him. He’s got an amazing personality, & he’s so happy to have gone through so much. I know he’s def. turned my entire life around. God has a plan for this special little boy. I know God sure showed me that I needed to stop taking life for granted b/c there are tons of people who fight to live everyday. I know LeeLand is a fighter!
Donna,
Thanks for sharing your daughter’s success story. I’m so glad to hear she’s doing well. You had quite an adventure! Come back often and join the discussions. Parents have so much to teach one another.
Jolene
Our little girl has Feingold Syndrome and TEF, as well as Microcephaly (small head). Nothing abnormal at all was detected during my pregnancy, however, I had the large amount of amniotic fluid and the two vessel cords discovered at birth. She weighed 3 lbs. 5 oz. at birth, but by a year, she weighed 12 pounds. We did the g-button thing at 9 months old and she has now been free of using it for about a year now. She’s going to be 10 years old in a couple of weeks. Her weight flucuates 45-50 pounds. She’s a skinny minny, but a sweetheart for sure! Thanks for having this blogsite.
Lori,
How old is Jacee now? Don’t you wonder how the surgeons can make repairs on such tiny bodies? Our son’s surgeon said the esophagus and trachea were the size of a pencil lead. Thank God for their gifted hands. Allen had a couple stricture surgeries, too, and lots of dialations. (I can never spell that word!) Keep reading over the next few weeks, to hear stories of more EA/TEF families.
Jolene
My little girl, Jacee, is 4 years old. She was born with Type C TEF/EA with complications with tracheomalacia. She was flown 8 hours from our home to have a repair, at 4lbs it couldn’t have been easy. Looking back it was a real whirlwind. She was hospitalized 8 hours away for almost 2 months. Her repair site had complications with leaking. Since, she has had a total of 11 surgeries for strictures. I am happy to have finally found people to be able to share and ask questions. Thank you everyone!!
Thanks, Jolene!
Hi Justine,
Wow, 15 pounds at 4 months after an EA repair! That’s fantastic. Many of these babies have such a hard time eating at first that they are small for their age. Our son was only 16 pounds at a year. Have you visited http://bridgingthegapofea-tef.com/home yet? You should find lots of information there. The EA/TEF community on FaceBook is quite lively, too, so check it out. To learn more about the emotions you may experience or have experienced, you might enjoy reading my book. Check out the “Buy the Book” tab on the home page, if you’re interested. You can also email me if you want to chat!
Jolene
Our little guy had surgery the day after he was born for EA. He is 4 months old now, and we are still learning so much about his condition and how it will affect him later on. We are very lucky his weight now is 15 pounds, and he is eating well. Thanks for the information that you are passing on. I would love to hear more about what to expect in the coming year with our little fighter!
I would love to know more of your son’s story, Liliana, as it sounds similar to our son’s first year. His repair was at 19 hours after a 750 mile life flight. Lots of bumps on the road, too, and he weighed 16 pounds at a year. He’s a small/average-sized man now, very wiry and strong. His personality fills any room he enters.
Jolene
What a great bit of information here! My 14 month old was born with EA/TEF which was successfully repaired when he was 1 day old. We’ve had quite a few bumps along the way but he’s such a fighter and has a smile that lights up a room. As small as he is (he weighs now at 14 months what his big bro did at 7 months)he is the strongest little guy I know!