My Baby with EA/TEF Changed My Life in 5 Big Ways

My Baby with EA/TEF Changed My Life in 5 Big Ways

by | Jan 31, 2023 | Different Dream, Encouragement, Special Needs Parenting

My Baby with EA/TEF Changed My Life in 5 Big Ways

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.
  1. 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.
  1. 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.
  1. 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.
  1. 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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Karena Skibinski is a mother, occupational therapist, and host of the what about the mama? podcast. After taking a year off to be home with her children, Karena recently started facilitating baby-and-mom circles to provide education and support during the fourth trimester and beyond. When she’s not busy running around with her two toddlers Lenny (3) and Lincoln (15 months) or working, you can find her in the kitchen trying new recipes, going on long walks, or taking an afternoon nap. Through her work, her mission is to bring more awareness to EA/TEF and to provide reassurance to EA/TEF families that they aren’t alone.

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God Authored our Disability Story

God Authored our Disability Story

by | Jan 25, 2023 | Different Dream, Encouragement, Special Needs Parenting

God Authored our Disability Story

God authored our disability story. It took a while for guest blogger Valeria Conshafter to say that about her daughter’s birth and EA/TEF diagnosis. In this post, she traces the journey from what she wanted her daughter’s story to be to what it is. For those of you struggling to accept your child’s story, may her words grant you perspective and faith to know that it is good.

We can’t change history. We can’t tell our life story differently. Things just had to happen this way.

My daughter was born with a birth condition known as Esophageal Atresia/Tracheoesophageal Fistula (EA/TEF). I didn’t plan for that. I didn’t want that for her. Or us. I had no idea that was coming. But it did.

The unexpected news of your baby being born with a rare birth defect and multiple other congenital anomalies was shocking. She was right there within arm’s reach, but we were not able to hold her until weeks later after her birth. Everything went wrong.

The story I believed would be mine to tell was of a perfect birth, natural, special, with mom and baby doing well announcements.

The story I wanted to tell long before she was even born was that we had a healthy and perfect baby and motherhood was amazing minus the feeding schedule and poopy diapers.

I imagined our story to be exactly like the ones I’d seen before. Mom and babies on play dates, parks, toddlers eating by themselves. I imagined us traveling with our baby to see friends and family everywhere, going oversees to meet my family in Brazil. I imagined the perfect beach vacation with my baby full of sand and those amazing first time on the beach photographs. I envisioned all the perfect first holidays, filled with family, fun, and special baby outfits. But no, that was not our story. Ours was different. One that I did not plan for, or ever imagine being possible.

It so happened that God authored our story. It had nothing to do with what I wanted or planned for. He had other plans for us and decided to bring our daughter into our world just the way she was supposed to be. Birth defects and all.

As first-time parents, bringing your newborn baby home is already overwhelming. Bringing a special needs baby home after months in the hospital was overwhelming, challenging, and scary. I remember not wanting to leave the hospital because I didn’t think I would be able to care for my daughter well enough. When I heard the nurse telling me, if she goes blue, rush back to the hospital, I thought I was living a nightmare. Parenting sounded terrifying!

Our first year was not an ordinary one.

We were back and forth to the hospital more than I can recall. We skipped play dates, traveling, and all the normal things parents do before their baby turns one. There were two major surgeries that first year and a total of 12 surgeries before she was 4.

Mealtimes took forever and were always stressful.

Most of our holidays were spent in the hospital, like her first Thanksgiving, Halloween, Valentine’s Day, and our birthdays. We left the hospital on Christmas Eve to spend Christmas at home and were back again before the New Year. Luckily, we spent her first birthday at home, but our baby could not eat solids by mouth yet.

Her birthday cake was just for the pictures.

In between hospital stays we looked for glimpses of normalcy and were grateful for the break. It was not easy. The visits to the various specialists were a constant stress followed by a multitude of instructions, tests, and daily therapies. There were critical times, scary moments, and 911 calls. There were long days and endless nights in the ICU when we did not know what to expect for the next day.

Fortunately, God always knew!

When I couldn’t see one day to the other between sleepless nights, inconclusive results, and surgery outcomes, He did. When I was at my lowest, He lifted me up. When I failed to believe, He showed me differently. When I doubted, He proved me wrong. And so, we kept on going. Praying. Trusting. Being amazed by His grace and promises.

Our story has changed over the years.

There are still challenges and the future is unknown. But so much has passed. Today, I am so grateful for all our girl has overcome. I am still in awe about God’s power, healing my daughter so she can be the teenager she is supposed to be right now. We’ve learned so many lessons from her. She is a fighter. Determined. Strong. Resilient.

Most of all, I love our story! It could not have been told differently. God authored our story, and it is our life story. Hard, broken, unique, but ours to live and to tell.

I would not change a thing.

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Valeria Conshafter is native of Brazil. She has a background in Counseling Psychology and currently works for a women’s organization providing emotional and spiritual support to women all over the country. She loves writing, cooking, and praying for her family and friends. Valeria lives in Houston, Texas, with her husband, Todd, their 15-year-old daughter, Sofia, and their two Standard Poodles, Chocolate and Oreo. You can reach Valeria on Facebook, on Instagram, and on Twitter.

Author Jolene Philo

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Raising a Child with Special Needs is Like Writing a Book

Raising a Child with Special Needs is Like Writing a Book

by | Jan 23, 2023 | Different Dream, Encouragement, Special Needs Parenting, Spiritual Support

Raising a Child with Special Needs is Like Writing a Book

“Raising a child with special needs is like writing a book,” I thought after emailing my completed manuscript to my editor recently. “During my pregnancy I had a vague outline of what parenthood would be like. And I prepared a plot outline before writing this story. But in the beginning, the details of the birth and the book were foggy and surprising.”

The first surprise regarding our son came twelve hours after his birth. He was diagnosed with a tracheoesophageal fistula, also known as EA/TEF, and flown to a hospital far, far away for corrective surgery.

Boom! My husband and I became supporting characters in our son’s adventure story. It was full of unexpected setbacks, victories, sorrow, and joy.

We went places we never imagined.
We made decisions we felt unprepared to make.
We met people who helped us along the way.
We discovered we were stronger than we knew.
We found the source of that strength in God’s faithful presence throughout the story.

Our son is forty now. At my aunt’s funeral a few months ago, he put his arm around me while I cried. He gives my husband and me advice. His story is ongoing. As we age, he will play a role in our stories, too.

Every day I see that raising a child with special needs is like writing a book.

Forty years after our son’s story began and a few days after sending that manuscript to the editor, I am once again in a situation similar to my son’s early days.

To read the rest of Raising a Child with Special Needs is Like Writing a Book, please visit the Key Ministry website.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

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Celebrate the EA/TEF Milestones, Especially the Doughnuts

Celebrate the EA/TEF Milestones, Especially the Doughnuts

by | Jan 19, 2023 | Different Dream, Encouragement, Special Needs Parenting

Celebrate the EA/TEF Milestones, Especially the Doughnuts

Celebrate the EA/TEF milestones. This is the advice guest blogger Jennifer Forman has for other EA/TEF parents. In today’s post she describes the journey her family has had with their now 4-year-old daughter whose early years were made more difficult by the COVID pandemic.

It is late afternoon on a cool, fall day and I’m sitting next to my daughter’s incubator in the NICU while I search the internet looking for answers to understand her condition. I stumble across a support group of other parents who have children with the same birth defects. Hours pass as I read question after question and stories from other families going through the same journey. One mother posted a photo of her ten-year-old son eating a doughnut for breakfast. The caption was “It does get better.” This was a gut punch because in the moment all I could see was our current situation—our daughter on a ventilator being fed by TPN. I couldn’t comprehend her future or ever getting to the point of her eating solid food, let alone a doughnut.

Two days prior, my daughter was born with esophageal atresia (EA) with a tracheoesophageal fistula (TEF), ventricular septal defect (VSD), and hydronephrosis. This grouping of birth defects is known as VACTERL. My husband and I found out two weeks before she came into this world that she had a suspected fetal anomaly, but no parent can prepare for what was to come next. On day two of life, my daughter underwent her primary repair for the EA/TEF. Thankfully, her surgery and recovery were relatively uncomplicated, and we were discharged home two weeks later to start our journey.

Any EA/TEF parent will tell you the first two years are the hardest, and our experience proved that be true. When you are in it, it can feel overwhelming and suffocating to witness your child go through doctor visits and routine colds that can turn worse on a dime. To date, my daughter has undergone eight procedures including an emergency removal of a meatball that was lodged in her throat. We have seen countless specialists and therapists to help with her food delays.

All we could do was celebrate the EA/TEF milestones—when she finally weighed 6-lbs, sitting in the highchair, eating avocados and all the easily mashable foods. One of my daughter’s first victories came at 2 years old when she was able to eat everything safely at daycare. We no longer needed to pack a special lunch with “safe foods” for her.

Experiencing this during a global pandemic has not been easy. I couldn’t even count the number of times I have received comments from strangers about my daughter’s cough and I have to politely reply,

“No, she is not sick. That is her normal cough.”

My response is met with looks of judgment about my parenting skills usually followed by people keeping their distance so as not to catch her sickness. I have had people refuse to ride in elevators with us because of her cough.

My daughter is now four and has overcome so much in her short life. She is undoubtedly the strongest little girl I know. My advice to fellow EA/TEF parents is to always acknowledge the setbacks, but to celebrate the EA/TEF milestones, no matter how small. Your child will overcome many challenges you never thought possible—like eating a doughnut.

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Jennifer Forman lives in Michigan with her husband Mike and two children, Leila and Abby. Jennifer is a medical professional who has dedicated her career to oncology patients and anticancer treatments. She is an advocate for her EA/TEF daughter who has been her inspiration.

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When Life Turns Out Differently Than You Had Planned

When Life Turns Out Differently Than You Had Planned

by | Jan 17, 2023 | Different Dream, Encouragement, How-Tos, Special Needs Parenting

When Life Turns Out Differently Than You Had Planned

When life turns out differently than you had planned, the first reaction may be fear or anger. Or a sense of being overwhelmed. Four years ago, guest blogger Kelly Simpson was completely overwhelmed when her husband was deployed overseas and their son Oliver was born and quickly diagnosed with tracheoesophageal fistula (EA/TEF). She’s here today to share five realizations that helped her overcome her state of overwhelm.

A job you love, a white picket fence, a caring and loving spouse, children—everyone can picture the life they want to make for themselves. I sure had mine all mapped out! In early 2019, my husband, Jeremy, left for development overseas. This was our first deployment, and our first child was due in the next eight weeks.

“It will be a quick eleven months.” That’s what I told myself. I was ready to take on a deployment as a solo parent to a newborn with a full-time job.

The next eight weeks passed quickly and at thirty-nine weeks, our precious baby boy was born. April 5th was a day with many emotions—happiness, joy, and love—but also despair, heartache, and loneliness. Other feelings I can’t describe quickly set in when Oliver was diagnosed with tracheoesophageal fistula (EA/TEF).

I felt overwhelmed. How could I take care of my child with these “problems”? Nineteen days in the NICU, nine or more procedures and surgeries in his first year of life. This was not in my expectations of becoming a mom.

I struggled for at least the first year with feelings of being overwhelmed and wondered “why me?” Here are a few things I learned during Oliver’s first three-and-a-half years of life:

1. I had to hand over my expectations to God—many times, everyday. What I have planned and expect from my life is nowhere near the goodness that He has planned for me. When I am in shock or despair, He is not. When I hand my expectations over to Him, there is room for His way and His glory.

2. Be content in my role. Shewww! This was so hard and can be an everyday battle. I struggled with “Why me?” for many months. Every person can think of their “Why me?” reasonings to argue with God. But they really amount to nothing—they will not change my circumstances. So, the more quickly I got over myself and looked for God and His purpose in my story, the more quickly I was able to embrace my new outlook on life and life to the fullest.

3. Jesus came to give me life to the fullest. John 10:10 states “…I have come that they may have life, and have it to the full.” I can have life and have it to the fullest—best, more than I could ever imagine even with these circumstances. And you can too! Consider Daniel in the lions’ den from Daniel 6. God did not pull Daniel out of the den of wild and hungry lions. God did not change Daniel’s circumstances. He simply came down into the circumstance to be with him. God gave Daniel his presence in verse 6:22, “My God sent his angel, and he shut the mouths of the lions.” God’s presence is with us in every circumstance. If God sent His presence to Daniel, he will surely come down here to be with me, right here, in this situation, during the many doctor visits, surgeries, and procedures, and during the night while I lie awake crying. His presence is a promise I hold on to.

4. God will use this circumstance for His glory—submit it all to Him.There’s such a weight lifted when I surrender my circumstances over to God. Whatever your circumstances are, your feelings are valid and real. I needed someone to tell me that in my new walk. But I could not stay there and let the feelings fester. My trials would not go to waste, and neither will yours. Your circumstances, trials, and feelings allow you to empathize with others who are hurting. Even though your situations may not be the same, your feelings may be. You will be able to help validate others and bring them comfort and wisdom. Don’t miss out on this opportunity. It will bring you and God great joy!

5. Do not be afraid to set boundaries. Others will not always understand and that’s okay. If others are not being respectful of child/family member’s needs, set boundaries. Do not feel bad for doing so. During these times you need those who are supportive and helpful to you.

I hope these realizations ease your sense of overwhelm when life turns out differently than you had planned.

Additional Links:
Pediatric Tracheoesophageal Fistula and Esophageal Atresia | Children’s National Hospital. (n.d.). 
Tracheoesophageal Fistula. (2012, April 29).

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Kelly has lived her whole life in Kentucky. She and her husband, Jeremy, have an almost-four-year-old son, who, born during a deployment, was diagnosed with tracheoesophageal fistula (EA/TEF). She has always felt a calling to serve others and is living the dream as an Army wife, middle school teacher, and now, as an encourager to those who are living a dream different than they had planned.

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This Is Our Normal

This Is Our Normal

by | Jan 11, 2023 | Different Dream, Encouragement, Special Needs Parenting

This Is Our Normal

“This is our normal,” Ellen Elizabeth says during the telling of her family’s EA/TEF story. What you are about to read can bring hope to families living through not only EA/TEF surgery and treatment, but also struggling with infertility and addiction.

I knew it wasn’t going to be an easy ride before my twins were even conceived. An infertility diagnosis sent me spiraling down a dark, lonely path that only I could get myself out of. Not only was I infertile, but I was struggling with alcoholism. The vicious cycle of addiction reared its ugly head most ferociously after my diagnosis of infertility. I no longer drank for fun; I drank to get obliterated every single day. I lost myself completely while blaming myself for all of the issues my husband and I were having becoming pregnant. It got to the point where I knew I would not be able to become a mother if I was not sober.

That was 6 years ago, and my twins are now 4. They have never seen me drunk or hungover. I would never have been able to have them if I had not gotten sober. Little did I know, getting sober was only the beginning.

We didn’t find out the sexes of the babies before they were born. I wanted it to be a surprise—never again will I experience a surprise like that. Baby A was born first. It was a boy! I was elated and crying as they put his tiny body into my arms. He was only 5 pounds and 2 ounces. His tiny little scream sounded different than I expected. I immediately fell into the deepest love I have ever felt in my whole life.

I had to give Baby Boy up so they could take him to the corner to get cleaned up and do all the things they need to do right away. Baby B, who was a healthy girl, wasn’t far behind. I immediately had to start pushing. As I was pushing Baby B, a nurse came over to me.

“Something is wrong with your son. He has to go to the NICU. We aren’t sure what is wrong right now, but we can’t get the tube down his throat to suck out the mucus.”

I was still in shock about what all was going on. “OK,” I stuttered. “Do whatever you need to do.” I wouldn’t see my son again for another 6 hours.

I found out from the doctors that Baby Boy had something called TEF and EA. I had no idea what either of these things were at the time. He proceeded to have TEF surgery on Day 1 of life. He was in the NICU for 17 days while his twin was home with us. Going between the two of them was a challenge, but we did it. Everything we went through was unexpected, yet we figured out how to navigate it.

Within the first 6 months of his life, we had to perform lifesaving CPR four times, call 911 twice to receive emergency care (it took them 4 minutes to get to our house—quite literally the longest 4 minutes of our lives). They inserted an NJ feeding tube, performed a tracheopexy, and surgically inserted a GJ feeding tube.

I was able to go through these terrifying events without drinking. Not drinking is my new normal. My son having TEF/EA is my normal. This is our new normal. Now, looking at him, you would have no idea. He just has a loud, barky cough that startles people. His tracheomalacia is severe enough that he still requires thickened liquids, inhalers, and a cough assist vest. He will always be prone to pneumonia and other bronchial illnesses. But he is our perfect little boy. His normal is not another normal. It is only ours. He picked us as his parents for a reason. We picked him as our son for a reason. I will forever be learning from him. And most importantly, I will forever love him for him. More than anything else, this is our new normal.

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Ellen Elizabeth is an infertility warrior and recovery advocate who uses her skills as an author and sober mother of twins to coach women struggling with feelings of shame and inadequacy. These women feel powerless to quit drinking or unable to bring a child into the world. Through radical honesty and recovery principles, Ellen inspires moms and their partners in all forms to define who they want to be and transform their demons into dreams. You can connect with her at her website itsellenelizabeth.com.

Author Jolene Philo

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