January is EA/TEF Awareness Month
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 (2 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: http://www.childrenshospital.org/az/Site1775/mainpageS1775P0.html
We Need your Help!
Help us to raise awareness regarding this rare birth defect. To learn how you can help visit our website at http://bridgingthegapofea-tef.com/home
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.
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!
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
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!
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
Thanks, 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!!
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
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.
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 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!
He was a big boy! How wonderful to hear things are going so well.
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?
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
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
Thanks, Christine!
Jolene
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!
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!!
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.
Thank you, Jen! I can’t wait to check it out more thoroughly.
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
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
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 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
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 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
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
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