EA/TEF baby

This week we found out our baby boy, Maxwell, will be born with a defect called EA/TEF. Basically, he will not have the ability to swallow and will need immediate surgery on his esophagus and trachea. He will be in the NICU for an extended period of time on a feeding tube or IV while he learns to swallow after surgery and breathe on his own again. We were also told that 50% of the time this comes with other birth defects and his heart is being closely monitored. This is something that could be fixed in one surgery or effect his ability to eat normally for the rest of his life. We will not know until surgery.

I’ve been transferred to a high risk doctor and have meetings set up with Max’s medical team.

At this point I’m feeling very overwhelmed. I can’t find any published books on TEF babies and am relying on Google for information.

I was supposed to start a new job next week, but with all of the appointments and the extended stay in the NICU, I need to resign before I even start (I’m a teacher and it wouldn’t be fair to my students).

This is pretty rare, so I’m not expecting anyone else to have experience with EA/TEF, but if you do, please share your advice and experiences.

Everyone else, thanks for reading. I just needed to share with someone. My friends and family are great, but they are still holding out hope that he will be born as a normal functioning baby and at this point, that isn’t reality. My husband is traveling for work and I filled him in on the situation, but we haven’t seen each other face to face since the diagnosis.