EA/TEF Family Support Connection

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....

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!!

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.

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.

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!

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.

Maybe you should try Prevacid?

How is your son doing??

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 :)

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!!!!

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...

Hi Meredith! I just added you as a friend. Thanks for your support!