My son was born with esophageal atresia. He is the reason why I started this blog. I want to help other families with my recipes, tips, and natural remedies.
I have a beautiful and healthy seven year old son who was born with a rare birth defect called Esophageal Atresia with Tracheoesophageal Fistula (EA/TEF). It is a disorder of the digestive system in which the esophagus does not develop properly. The esophagus is the tube that normally carries food from the mouth to the stomach.
Esophageal atresia is a congenital defect, which means it occurs before birth. There are several types. In most cases (like ours), the upper esophagus ends and does not connect with the lower esophagus and stomach. The top end of the lower esophagus connects to the windpipe. This connection is called a tracheoesophageal fistula (TEF). Some babies with TEF will also have other problems, such as heart or other digestive tract disorders. Thankfully, our son did not have any other major abnormalities except as a baby and toddler he had a lot of reflux and respiratory problems. Esophageal atresia occurs in about 1 out of 4,000 births.
I didn’t know he had it until the day he was born. A few hours after delivery, the doctors confirmed it and my son had surgery to reconnect his esophagus properly at only 2 days old. We stayed in the hospital for about two weeks and then we were sent home with lots of positive thoughts from doctors that our son will develop normally but will need constant monitoring with food. Doctors also mentioned his trachea was very soft because they had to cut the upper connection he had with the esophagus so we should be prepared for lots of respiratory illnesses and a constant barking cough.
At about six months of age, my son started showing signs of reflux so we had to go to a specialist who prescribed reflux medication. He had to take this medication daily and according to the doctor: for life! His reflux was pretty bad and the medication seemed to help, so we had to buy the idea he will probably be on this med for the rest of his life. At about 9 months of age he got sick for the first time and was diagnosed with bronchiolitis. He recovered in about 5 days but his cough lingered for about 2 weeks. After that bronchiolitis episode, he started getting sick often: fevers, respiratory infections, and a barking cough that seemed to never go away! We were at the doctor every 2 weeks! We will always come out with more and more medications: broncho dilators, steroid treatments, antibiotics, proton pump inhibitors, and pain relievers.
This is when I started to think about ways to boost his immune system and find natural alternatives to cure his reflux and his numerous respiratory problems. I started researching and investigating about nutrition. I then started making my own purees most of the time instead of the processed baby jars. Homemade baby food is twice as nutritious! I started looking into natural ways to cure reflux and when my son turned 1, I started giving him ginger and aloe vera.
We were also constantly dealing with stuck food episodes. My son used to get food stuck in his esophagus all the time. He no longer wanted to eat baby food, he was so tired of eating everything in a puree consistency, so we had to cut everything small into tiny tiny pieces. Vegetables, fruits, and meats were always a problem. We needed to pay close attention to his nutrition to optimize his health. Getting fresh fruits and vegetables into his diet was a challenge because of his difficulty swallowing. His reflux was not getting better and we had to use albuterol and steroid treatments constantly.
Thankfully, my wonderful husband believes in cooking with fresh ingredients and he started looking into ways to prepare healthy meals other than purees, so that my son could manage and enjoy without getting them stuck. He used to make souffles all the time, blending vegetables and meat so our son could eat them without problems. We used our slow cooker a lot because it makes meat tender and vegetables extra soft. I also started giving him fruit and veggie ice pops with added ginger, raw honey, probiotics, and aloe vera for his reflux. Little by little we came up with new ideas as he grew older, like the veggie nuggets, homemade chicken nuggets, and other recipes and ideas I share on this blog. I also made a list of Best Products For My EA-TEF Child and EA/TEF Best Kitchen Tools , check it out!
Now that he is six he can eat a great variety of food without any problems. Little by little he improved in the things he could eat; his esophagus grew wider and his trachea got stronger. We are so happy and thankful with his progress! He still gets food stuck once in a while when he forgets to chew well, but he handles it like a champ. We will always need to closely monitor his esophagus but we are hopeful that with time, he will be able to learn his limitations and eat everything.
He also grew out of his terrible reflux and has not taken any medications since he was 2.4 years old. We need to monitor it with periodic reflux tests but so far, natural remedies are working. Respiratory problems are also history. He has not needed a broncho dilator or steroid treatment in over 1.5 years! He doesn’t get sick often anymore and when he does, he recovers faster. Of course the “TEF Cough” is still present when he gets sick and lingers for a while, but it is something you just have to deal with when you are an esophageal atresia survivor.
We do not know what other challenges we will have to face in the future, but we feel a lot more confident because we have an amazing Pediatric Surgeon, Dr. Burnweit, (who saved Matias’ life when he was only 2 days old) and we know that a healthy lifestyle will make a big difference in his development. We take it day by day, enjoying watching him eat things he couldn’t handle in the past, and being thankful for our happy, strong, and healthy little boy.
If you have a child born with esophageal atresia you will know how to stay strong and positive. It is not easy, my son has to see more than 5 specialists periodically to monitor his development, but so far he is growing healthy without problems.
I am a huge believer in natural medicine and nutrition. After extensive research and life experience, I truly believe we can improve and most of the time overcome health problems with a natural approach. My husband and I also became more conscious about the foods we eat. We wanted to set the right example with our own food choices, so our son will eat the same meals. As a result, we now eat more vegetables and fruits than we ever did before!
I want to inspire more people to eat healthy and help other EA-TEF families sharing my recipes and ideas. This is the reason why I started a page on Facebook and now this blog.
Please see My Story Update. If you have an EA-TEF child be hopeful, it gets better. We are now a happy family of 4. Our son reminds us how fortunate we are every single day.
evelyn says
Nice post!!thanks for sharing¡¡My firts son had a serious stomach reflux until more and less he was 3 years old..so i can understand a little bit what you lived ….we really needed perseverance ^^but thanks of that disorder the whole family changed feeding habits..so now all of us eat more healthy! ..you have to have another baby to see how easy is feeding babies..sorry for my english .greetings from Perú
Anna says
I was happy to see your site posted on the EA/TOF Noises FB page! I’m always looking for new ideas for my 16-month old son (also born with EA/TEF). He gets food stuck often and if he has a cold or any extra mucous, the sticking happens even more. I look forward to more good stuff from your posts!
ursulaherrera10 says
Thank you! You can e-mail me at creativeandhealthyfunfoodideas@gmail.com
Komal says
Hi ursula.happy to see ur baby doing good.i want to know have u done dilation procedure after surgery ??
Creative And Healthy Fun Food says
Hi, in our case we never needed one. My son has never had a dilation!
Komal says
But my baby has the same case as ur son had.My baby is 11 months old she can eat runny thin food but chokes on every solid thing currently she’s on breastmilk n rice cereal. She has a small stricture so Her surgeon decided to do dilation.
Aparna says
Hi komal.. Is Ur baby diagnosed with vacterl??
Komal says
No she has a stricture .
ursulaherrera10 says
I will try. Thank you for the recommendation!
Elena Castañeda says
Hi, My name is Elena, I am fron Peru in South America, I have a 12 years old boy, Mateo, who was born like your son with EA/TEF. Mateo has reflux and I want to ask you about the aloe vera, I¨v never give him that. How I get that, pills or natural, dosis, please I want everythig natural to end reflux. Thank you for your time. Elena
Ursula Herrera says
Hi Elena, I am also from Peru! About aloe vera, I buy it fresh and blend it with smoothies (fruits and veggies). Have you tried giving your son probiotics? Look for a good brand and if possible in liquid form. The dosage will be in indicated according to your child’s age. Ginger is also fantastic for reflux! If you want, please subscribe to my blog (the first box in the main page) and you will receive weekly updates including smoothie recipes and other fun food ideas. I am going to post an anti-reflux smoothie recipe soon so that you get an idea of how I incorporate the ingredients. If you have any other questions, please let me know.
Ashley says
Thank you for sharing! My son is still in the NICU, but I anticipate him facing many of the same issues your son did. So I’m happy to get some information, recommendations, and ideas ahead of time.
Creative And Healthy Fun Food says
Thank you for your message Ashley. If there is anything else you would like to know, please feel free to contact me. I will be happy to help if I can.
Sue Paul says
Hello, my name is Sue Paul and I commend you on what you have accomplished on top of being an EA/TEF mom, a wife, mother to others, and scheduling for a family with multidisciplinary needs. I am the wife of a 46 year old husband born with long gap esophageal atresia. He also went through several pediatric surgeries and after a thorough management of his condition as a child he did not experience many issues until he was in his thirties. I would look forward to further chat with you when you might have a minute or two to spare. Thank you for sharing your story it was informative and inspiring.
Creative And Healthy Fun Food says
Thank you. You can email whenever you want 🙂 I would love to hear your husband’s story.
Shannon Oxner says
What issues did he face in his 30”s?
Kristi says
I’m so glad I found your blog! My son was born earlier this year with EA/TEF. It was so scary at first, and we really had no idea what to expect. Thankfully, he is doing really well now.
We are just starting to feed “solid” foods (he is still a baby, so they are really pureed foods), but I can’t wait to try some of your ideas as he keeps growing!
Creative And Healthy Fun Food says
Thank you Kristi. If you have any questions contact me 🙂
Kamin says
I want very thank you for this article. My son have the same sicknes. Now he have 1,2 yare and we still fighting for his health. You make my day!
Creative And Healthy Fun Food says
Thank you for your message. I am so glad to know I can help other EA families.
Aparna says
Hello komal.. R U from India??
Aparna says
Is Ur baby diagonised with vacterl?
Creative And Healthy Fun Food says
Hi, my son was not diagnosed with vacterl.
AY says
Hi, Am a Nigerian, my son had a same birth defect, but due to the condition of my country, no standard equipment to carry out the surgery and they suggested a Gastrostomy tube feeding. They carry out the operation I mean the Gastrostomy tube feeding, but he passed on the following morning after a very high temperature……. this is very painful….but…….
Thank God for the life of your son. Am happy for you.
Creative And Healthy Fun Food says
Thank you so much for your comment. I am so sorry about your son. Sending you a big hug from Miami.
Amber says
I could’ve written this post! My (almost 3 year old) son is also an EA/TEF baby and though our recovery was much more intense due to complications from initial surgery, we too have been able to get off the reflux medications but no luck on the improving his immune system even though he eats fruits and veggies like a champ! I’m so glad your son is doing well!
Creative & Healthy Family says
Thank you Amber! It gets easier after 3. Keep up with the good nutrition and you will see the results! My son used to get sick all the time too! Now he is 7 and he is very healthy and strong! He doesn’t get sick often anymore!
Jaya says
Hi my son was born with trachea esophageal fistula. He underwent a surgery but taking a lot of time to recover. Kept under ventilator. So worried.
Creative Healthy Family says
Hi Jaya, So sorry to hear that your son is taking a long time to recover. We spent 3 weeks in the NICU and it was not easy. Stay strong and take it one day at a time. Hope your son recovers soon.
Radiant says
Hie dear..your son will recover soon..just keep the hope and faith .be strong.i was in NICU fir 3months with my angel but she survived
Radiant Takavada says
I have a daughter who is one year and 5 months old now and still struggles to walk independent .she walks leaning on the wall or using the couch.at what age dd your boy start to walk on his own
Creative Healthy Family says
Do you mean 5 months or 5 years old?
CinDiLo says
I am a 50 year old EA/TEF baby. It is wonderful the way yup are treating him holistically. I was hospitalized for the 1st 13 months of my life and was not operated on until 9 months. Until 5 years old liquids would come back up and I also had to eat very small pieces of food. I have had no problems except reflux, but my sister, husband and many adults have that too. Bless you and your family ❤️
Creative Healthy Family says
Thank you so much for sharing your story and for your comment. It feels so great to know of other adults born with EA/TEF that are doing great. It gives me hope 🙂
Sandy says
I am so glad I found your blog! I have a 14yr old son who was diagnosed with Achalasia over summer this year. It is a very rare disorder in which the esophagus ceases to have normal peristalsis and the EGJ junction becomes very narrow and does not relax.
He underwent a minimally invasive surgery called POEM which has given him much relief. However he has a lifelong increased risk of GERD and related complications.
He was on once a day PPI of 20 mg. In preparation for his 3 month follow up endoscopy and Bravo test he had to be off PPI for two weeks. He experienced rebound hyperacidity for 4 days but then was symptom free even without PPI. However endoscopy shows he has grade A esophagitis. I wonder if the 4 days of hyperacidity could have caused the erosion.
He will be on once a day PPI until due for another endoscopy in a year..It’s a shame because we manage his diet very carefully with nutritious smoothies, low acid food etc.
Would you mind sharing how you were able to wean your son off PPIs? Seems like he was a lot younger when you did that. I would appreciate any advice/ guidance.
Thanks again for have a positive blog about a very difficult situation!!!
Creative Healthy Family says
Thank you for sharing your story and for your comment. My son had terrible reflux the first years of his life. We slowly reduced the PPI dose and started with natural remedies: ginger, probiotics, and other natural remedies I share in my posts. Slowly but surely we were able to stop the medication all together.
Renu says
My son born on 20 October 2018.he had type ist esophagus atrisia with long gap and his ist surgery after birth is complete but doctor said th Long gap is large so we do not complete second surgery immediate and they said us feed baby by gastronomy for 12 months then we done this operation when the long gap grow enough.so my tension is that really esophagus grow after 12 month? Pls reply this time is really hard to me.
Creative Healthy Family says
Hi Renu, Thank you for sharing your story. My son was born with a short gap so I really don’t know much about how long it takes for an esophagus to grow. You might want to join some Facebook groups like Born Unable To Swallow or US: Bridging the GAP of EA/TEF. You can ask questions and get answers from other parents. Hope this helps!
Maria says
Hi Renu, my son was also diagnosed with long gap EA. Dr. Told me we have to wait until he is 6-9 months of age. How challenging is this especially with the secretions and risk for aspiration pneumonia?
Diana Pinto says
Hi Ursula,
I’m so happy I found your blog and to see all this comments.
My son, he is 20 months old and he was born with Esophageal Atresia, he was in the NICU for 29 days, he was also born with trigger fingers and kidney reflux.
My main concern is his EA, he cannot eat solid foods eventhough he had a dilatation on his upper esophagus like about 3 months ago. It didn’t work and now the GI doctor is saying is his lower esophagus that is a little bit narrow. . The GI wants to perform a monometry test but he thinks he is too little to cooperate with the test so he might just do another dilatation instead.
My son gets the flu often so I don’t know if he has problems with his lungs or is just allergies, so I was thinking before doing another dilation to take him to the pulmonologist and to check if he is allergic to anything.. When he eats small solid foods I hear a lot of phlem and he sounds like there’s no air passing through so that’s when he throws up.. He does not vomit with liquid or puree is just when he tries solid foods.. His food/purees are healthy, I will include aloe vera and coconut oil and see if this works a little bit. . Any suggestions or anybody else with same conditions as my Son?
I’m sorry for this long post, is just that sometimes I get desperate but is good to hear that I am not alone..
Thank you.
Creative Healthy Family says
Hi Diana. Thank you for sharing your story. I can tell you from my experience that the first couple of years are the hardest. My son is now 8 years old and eats EVERYTHING! It gets better!!! My advice is take it one day at a time. Little by little we improved until my son was able to eat without problems. Hope this helps 🙂
Sheri says
Hi do you use fresh ginger? I was wondering if ginger oil would work just as well.
Creative Healthy Family says
Hi Sheri, I use fresh grated ginger. You can just buy fresh ginger at the supermarket and grate it with a spoon. I have never tried ginger oil.
Shannon Oxner says
Hi I’m Shannon, 27 year old EA/TEF adult. Just got home from the GI doctor and was feeling alone. It’s nice there are others who understand.
Creative Healthy Family says
Thank you Shannon. You can always email me if you have any questions.