My baby with EA/TEF changed my life in big ways, says guest blogger Karena Skibinski. The same is true for any parent of a child born with EA/TEF. It’s the ways our babies change us that varies. You’ll discover how Karena’s story is the same and what’s different from yours. For those who aren’t EA/TEF parents, Karena’s story will raise your awareness of this rare birth anomaly.

The day after my son Lincoln was born was the day I learned about Esophageal Atresia (EA)/Tracheoesophageal Fistula (TEF). We had some yellow flags during pregnancy that were being monitored but never did we envision an 87-day NICU stay. The night that he was born, Lincoln was transported to the NICU at Cincinnati Children’s Hospital. As it turned out, it’s one of the best in the nation with one of the best doctors in the world for Lincoln’s condition.

Those initial days were an indescribable fog. I spent hours scouring the internet, trying to find as much information as I could about his prognosis. The best way to summarize my findings is to say that each EA/TEF child’s journey is unique; the best thing to do is to take it one step at a time.

Lincoln is 15 months this month (January 2023), and that feels incredibly special. Every day deserves a celebration. I’d be lying if I said this journey was easy. This past year has been the most challenging of my life and one of the absolute best. It’s given me a different, more colorful perspective on life, one that I’m still trying to find the words to describe.

One thing I know is that my baby with EA/TEF changed my life in big ways. I’d like to share 5 of those ways with you here.

1. I didn’t return to my full-time job once my maternity leave was over. Lincoln was still in the NICU once my 12-week leave passed by, and I couldn’t imagine having to go back to work while he was still in the hospital. Extending my leave wasn’t an easy option so I submitted my resignation. We had to adjust our priorities over this past year to make it work financially for our family, but I am incredibly lucky for my supportive partner and the means to be able to stay home. It’s been a busy year, full of follow ups with numerous doctors, therapy appointments, outpatient procedures (dilations), and trips to the ER. Despite the challenges, I am so grateful for being with him, day in and day out.

2. I view self-care differently nowadays. Prior to becoming a stay-at-home mother, I enjoyed the typical self-care of an afternoon at a coffee shop, dinner out, or treating myself to some new moisturizer and makeup. Now my self-care looks different—an uninterrupted shower, a sunny afternoon walk with my boys, or a solo Target run for the essentials. I once thought that basic activities like taking a shower or running an errand should not be considered self-care for moms, and maybe that’s true; for now, in this season of my life, it can be.

3. I’m familiar with the medical team and the role of each doctor in Lincoln’s plan of care. I’m much more confident with speaking up for and advocating for my baby. I’m comfortable with asking enough questions to get a good understanding of his plan of care. Parents are an integral part of the treatment team; we know our babies best. The confidence I’ve gained from this experience has spilled over into other areas of my life.

4. I’ve adjusted my views on developmental milestones. Given my background as an occupational therapist (OT), I used to be anxious about Lincoln’s delays. I worried I wasn’t doing enough to get him “on track”. As time passed, I realized that life can be fully enjoyed regardless of Lincoln’s developmental timeline. One of my physical therapist friends reminded me that it’s not so much the age that’s so important, but the progression of skills. That perspective helped a lot.

5. I find greater joy in the mundane. It’s important to note that a lot of things have remained comfortably the same. We experience the typical squabbles that any family with 1 and 3-year-olds have. We still love our nature walks, going to the park, story time, and cooking dinners together. I’m still growing my own OT practice.

My baby with EA/TEF changed my life in big ways. Our family is finally finding a good rhythm. This is our journey, and I wouldn’t change a thing.

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Image by arodsje from Pixabay