One patient’s story: our baby’s Esophageal Atresia and Tracheoesophageal Fistula

Brandon at Children's

My husband Brain and I are about to celebrate our 14 year anniversary. A big milestone for any relationship, but after the hardships we’ve lived through in the past few years, it seems extra special. For the first 10 years of our marriage we tried for kids, but it never happened. Eventually we sort of accepted that it wasn’t meant to be and resigned ourselves to a life of sleeping through the night and ample free time. Then, almost out of the blue, I became pregnant. It was such a blessing; we were beside ourselves with joy.

But 31 weeks into my pregnancy I became seriously ill. After several trips to the hospital, a test finally revealed I was in full-term labor, and had been for almost an entire day. At this point we realized both my child and I were at serious risk for infection because the labor had gone unnoticed for so long. Doctors immediately began preparing me for my son’s birth. Later that afternoon we welcomed Brandon McGahan into this world. He weighed just 4 lbs 9oz., and from the moment he arrived, life was a struggle for him.

Right after Brandon was born he was taken from my arms so the doctors and nurses could make sure his small lungs were functioning properly. After what felt like an eternity I heard his faint little cry for the first time. A nurse held him close to me for just a moment so I could touch him, but then whisked him away for monitoring because he was having breathing trouble. Shortly after that I was taken to another surgery room to address complications I was having as a result of the birth.

The next thing I remember was waking up in the recovery room with Brian by my side, but Brandon was no where to be seen. The nurse told me Brandon was in the Neonatal Intensive Care Unit (NICU) and that I wouldn’t be able to see him until the morning. It broke my heart to know he was so close but I still couldn’t be with him.

We arrived early the next morning at the NICU and seeing him hooked up to so many tubes was traumatic to say the least. We sat there, holding his tiny, delicate hands, when a nurse informed us that Dr. Russell Jennings from Children’s Hospital Boston would be coming to see us. After meeting with Dr. Jennings, the reality of our situation became very apparent. Brandon was born with Esophageal Atresia and Tracheoesophageal Fistula (EA/TEF) and needed immediate surgery if he was to live.

Brandon’s surgery corrected his EA/TEF but he would still need a lifetime of medical monitoring, medication and medical procedures. We also learned that EA/TEF, once it occurs, can cause other serious birth defects, some of which had already affected Brandon.

Brandon pre-surgery

His first year of life was just as difficult as his first few days. Brandon had constant trouble breathing and on more than one occasion I had perform CPR to keep him from asphyxiating. It was a horrible experience that no parent should ever have to endure.

At 18 months Brandon was still struggling to breathe so we took him to see Dr. Manali Amin, a pediatric otolaryngology specialist at Children’s. Dr. Amin preformed a procedure that revealed our little boy had developed a cyst that was blocking 80 percent of his already narrowed air passage. He had a severely blocked nasal passage as well. Over the next two years he underwent several surgeries and procedures, and while he’s gotten much better, not a day goes by where I don’t worry about his health.

Of all the things we have been through, the only question I’ve ever really asked is ‘why isn’t there more information available on EA/TEF?’ Rather than wait for someone to answer me, I’ve made it my goal to raise awareness regarding EA/TEF and the lifetime of hurdles faced by children born with the condition. It’s been a difficult journey, but the adversity has strengthened my resolve to educate more about this condition. What doesn’t break us will only make us stronger.

As part of our awareness raising efforts, Brain and I founded Brandon’s Run, a motorcycle ride and fundraiser that benefits Children’s Hospital Boston’s Advance Fetal Care Center and the Esophegeal Artesia Treatment Program. In promoting the run I’ve not only discovered how little the general public knows about EA/TEF, but also what little support is available to families who have a loved one effected by it. With the help of Dr. Jennings and Dr. John Foker I’m currently working on creating an online community where EA/TEF families can interact and support one another. The organization is called Bridging the GAP of EA/TEF: A Family to Family Support and Resource Network.

Juggling work, a social life, and the medical needs of my child can feel overwhelming at times, and more than one person has asked me how I find the time and energy. Too be honest, it’s not easy; but at the end of the day there’s nothing I wouldn’t do for my child, or the thousands born just like him.

10 thoughts on “One patient’s story: our baby’s Esophageal Atresia and Tracheoesophageal Fistula

  1. We too have a daughter with EA/TEF and wish there had been more information and support when we were trying to understand her diagnosis. Lydia currently is a patient at CHB in the NICU and under the care of Dr. Foker and Dr. Jennings. We only wish we could have gotten her there sooner. Thank you to Lori for raising awareness and providing support for this difficult and rare birth defect.

  2. our son was also born with TOF O/A (tof rather than tef as we are from england) and we too are trying to raise more awareness over here too. the vast majority of people do not know what a tof is, and hopefully working all together we can all help raise awareness of this condition 🙂

  3. I would love to talk to someone about the condition. My son was born on Sept 10th, he has type A. He will undergo surgery when he is 3 months old we are waiting for the gap to grow closer and for him to get stronger. I would love to talk to someone about their experiences and learn more about what to expect. The doctor has said to expect for him to come home with a feeding tube. Please call me at 904-422-8911, thank you Stacey

    1. hi stackeykct can u email me what all stages you went as my son is also having type a. Kindly send me all experiences , stages of recovery to my email id. oberoy3c@gmail.com

  4. I would LOVE to talk to you about your son’s care at Boston’s. MY daughter had her repair at day 5 and at 7 weeks old, we’re back in the hospital with complications that I feel aren’t being addressed. Please email me, robinz@chartertn.net or look me up on FB-Robin Bledsoe. Thanks!!!

  5. Hello!!! I am an SLP student (Masters level). I am working on a presentation about Esopageal Atresia and I am woundering if you can share with me any information about this condition. I have to present for the rehabilitation departement at my placement and besides of talking about definition, surgery, complications, etc. I am planning to focus more on the feeding rehabilitation process. It is dificult to find specific information so I will appreciate any suggestion or recommendation. Thanks a lot!!! e-mail address: natycardenas@hotmail.com

  6. i was born with  Esopageal Atresia. Im 13 now and i have gone through 12  surgeries. And i will tell you all it gets better. These things only made me stronger. I was the 3rd baby to every be born with type (F). They create the way of removing my organs and creating and Esophaguss. What doesn’t kill you makes you stronger!

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