EA awareness month

Did you have any idea there was such a thing? There is, the month of January is EA/TEF awareness month. So, really – what is Esophageal Atresia? I’m going to start at the beginning of Isaac to truly explain it.
At our 20 week ultrasound (which was really done at 18 weeks since I’ve never been able to wait) we found out we were having a boy, we also found out that our boy appeared to have no stomach. We weren’t too concerned – I mean, certainly there was a stomach there… we returned the following week to look again, and once again – no sign of a stomach bubble. A very nice radiologist came in and referred me to a high risk OB who could narrow down what we were looking at. She did tell me we were more than likely looking at some sort of birth defect.
Our first visit with the high risk doctor was when we realized this could be bad – mostly because that is exactly what the doctor told us. He took a look at our quickly moving, already very handsome little Isaac and said “this is bad” (from this point on we can refer to him as Dr. tact-less!). Dr. tact-less then looked at me and said “we need to discuss termination”. He really said that, to me – as I watched my beautiful boy flipping and swimming on the ultrasound screen.
Thanks to an incredibly thorough ultrasound at Children’s National we were able to see that Isaac did in fact have Esophageal Atresia, and no complicating additional factors that commonly come with EA (anything from missing kidneys to Down Syndrome).
We learned that EA occurs three weeks after conception, one cell that should divide doesn’t. It just doesn’t divide.
Because of this a child is born with one of 5 types of EA/TEF (Esophageal Atresia/Tracheal Esophageal Atresia). There are 5 types of EA/TEF, of course Isaac’s was one of the more complicated. In a baby with pure EA (Isaac’s EA) there is a top piece of esophagus that ends in what is called a blind pouch, it just ends somewhere in the upper chest cavity. If you’re lucky, there is a lower piece that comes up from the stomach, and also just stops. If you’re REALLY lucky, your baby has TEF – which is essentially a connection between the Esophagus and Trachea, not a dreamy situation – but a much, much easier fix. In this unlucky circumstance we were lucky to have a diagnosis before birth – this is a luxury most parents do not get.
Fortunately, we found out rather quickly that our 3 pound, 3 ounce baby had a good chunk of lower esophagus – which SHOULD have made him easier to fix. We were told to expect several months in the NICU – at the time it felt like the end of the world.
A common belief with EA is that if you leave the baby alone the two ends of the esophagus grow towards each other, eventually close enough to connect. We know now that this is not the case – and logistically doesn’t make sense. We did try this with Isaac, and his surgeon at Fairfax did try to connect him – but was unable to. He also tried the technique that ultimately worked, but due to a lack of knowledge about the technique this ended up tearing the top part of Isaac’s esophagus – making the gap between the two ends even larger and making the top piece essentially un-usable.
Eventually, Isaac required his trach as a result of the first surgeries and the impact on his vocal cords – the night we confirmed this was necessary mama had a brief nervous breakdown in the NICU – which turned out to be quite the blessing…… a nurse that only worked with Isaac for a few hours the whole time he was in the NICU happened to be working that night, and she encouraged me to look at other options…… bringing us to Minnesota.
Of course, the story gets longer from there – but we have covered the basics of EA as they relate to Isaac. We often ask ourselves now if Isaac is still and EA baby, or a former EA baby. I think he will always be an EA kid – for the time being EA still means esophageal dilations every month or two, risks or tearing that very expensive Esophagus and lots and lots of nasty reflux.
So, there is EA in a nutshell. Isaac is Isaac because of EA – the experiences it has given him (and us) have shaped him into the amazing boy he is.

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