Lessons from First Year EA/TEF Parents

by Jan 10, 2024Encouragement, Special Needs Parenting, Uncategorized8 comments

Guest bloggers Katharine and Jake Kaczmarowski offer their own lessons from first year EA/TEF parents to you.

Today’s lessons from first year EA/TEF parents come from guest bloggers Katharine and Jake Kaczmarowski. As is often the case, their advice will benefit more than the EA/TEF crowd. It will resonate with parents of children with a wide variety of disabilities. Perhaps it will resonate with you.

Our family’s story began at our son’s 20-week anatomy ultrasound when our son Mason was diagnosed with congenital hydrocephalus. This condition causes an abnormal buildup of cerebrospinal fluid in the brain causing a wide range of developmental delays. At birth, he was unexpectedly diagnosed with another birth defect where the esophagus and stomach are not properly connected, called tracheoesophageal fistula and esophageal atresia (TEF/EA). He spent 6 weeks in the NICU, as he needed multiple surgeries to repair and manage these diagnoses.

It is hard to believe that we are approaching Mason’s first birthday. We have adjusted to a busy schedule over the past year. We attend regular developmental therapy appointments and see many medical specialists, both in our local area and over 2 hours away. Our son is delayed in meeting most developmental milestones. However, he is resilient and makes progress each day. There have been some bumps along the road, including unexpected hospital stays and new challenges, but seeing his bright smile every morning is our greatest motivation.

These are four lessons our son has taught us in his first year:

#1: Celebrate the “inchstones.”

It can feel discouraging to focus on big milestones, like head control, sitting independently, and walking. It is difficult to do other things in our life, like housework or hobbies we enjoy, because it feels like he needs our attention all the time if he’s going to make progress. We remind ourselves that he is developing at his own pace. Instead of the milestones, we celebrate each small incremental stride our son makes while working on those bigger goals.

#2: We are his greatest advocates.

While we are surrounded by a great medical team, we know our son best. At each appointment, we learn all that we can about his condition and how each provider can help our son. We constantly ask questions and give our opinions. Ultimately, we come to a collective decision with our son’s providers to make the best medical decisions for him.

#3: Try it again, try it differently.

Our son came home feeding mostly from a gastrostomy tube (G tube). We tried changing so many things and thinking outside the box to improve his ability to drink from a bottle. Eventually, with the right combination at the right time, he succeeded with the bottle at four months old and now enjoys purees. Mason is always changing. We constantly reevaluate what he needs to succeed and are not afraid to return to things that previously failed.

#4: Remember all the good.

This is hard. Some days can be very hard. The stress and the difficulty of this experience can be overwhelming, especially when you are comparing it to what other parents experience or your own expectations. But no matter the added challenges, the smiles, laughs, and love are still there, perhaps even more so. Embrace it all, most of all your lessons as first year EA/TEF parents.

Jake, Mason, and Katharine Kaczmarowski

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Image courtesy of Katharine and Jake Kaczmarowski

By Katharine and Jake Kaczmarowski

Katharine and Jake are young professionals living in Duluth Minnesota with their son, Mason. He was born in early 2023 with congenital hydrocephalus and TEF/EA (associated with VACTERL). He also has a chromosome 6q26-q27 deletion. They have been married for two and a half years and each day strive to parent as a team. As a family, they enjoy strolling along Lake Superior’s shore with their dog.


  1. Jolene

    It sounds like Mason and his parents are blessed to have you in their lives too!

  2. Traci Yackel

    The phrase celebrate the “inchstones” will surely resonate with parents of a child with special needs of any kind. Jake and Katharine have faced every challenge with courage and optimism even though the experience has been unexpected and new territory. Mason is very lucky to have them for parents, he is loved and adored by so many. I pray for all three of you everyday and are an inspiration. Love you! – Grandma Yaya

  3. Jolene

    Joan, God does know what he’s doing! Jolene

  4. Jolene

    I agree Verrella. That smile of his––pure joy!

  5. Jolene

    Sue, thank you for affirming and encouraging Jake and Katharine. Supporters like you will bolster their strength and resolve. Jolene

  6. Joan

    I have seen firsthand how they parent, it is full of love and compassion. God knew what he was doing giving Mason to them , and them to Mason

  7. verrella severtson

    You are a remarkable couple of parents taking care of a child that is experiencing wonderful loving care. He is a joy to have in the family.

  8. Sue Pribbernow

    I am beyond proud of Jake and Katharine for their love and joy of Mason, and their amazing ability to be the very best parents to Mason that they are. They have met this unexpected parenting challenge head on with intelligence, strength, perseverance, patience, determination, commitment, love, and faith. They are an excellent example of a young couple who have put their needs aside to give their child a loving, joyous, comfortable existence while dealing with extraordinary issues. May they and Mason be blessed!
    Love you all, Sue

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.



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