The interview below is one very close to my heart. January is EA/TEF Awareness month. So what is EA/TEF? This is exactly what I asked when I learned my friend’s child was born with this defect. Over the months that her beautiful child was at Boston Children’s Hospital, I watched firsthand as my friend, Heather and her husband stood by their first born’s bed side and were remarkable pillars of strength for their son and for each other. I quickly learned what EA/TEF is and how it sadly affects children and their families. They had a happy ending to their story and today it brings joyful tears to my eyes to see their son leading a normal and happy childhood.
In honor of this loving couple and their brave boy, Elliot, and all the many other families having to struggle with this “no known cause” birth defect, I wanted to help raise awareness about EA/TEF so we can continue to educate each other and advocate for those babies born with this dreadful defect. Here is Elliot’s story…
Where do you live?
Long Beach, California
How many kids do you have? Ages?
I have 2 kids, Elliot (soon to be 7) and Josie (4)
How did you and your husband meet?
Jay and I met nearly 15 years ago on a crowded beach. I was immediately attracted to him for his wild, curly hair and blue eyes. He was reading a physics book while lounging on his beach towel. We struck up a conversation about his book and how he was doing research for a project at work, he is a scientist (my grandfather was also a curly haired physicist). We fell in love and married five years later.
What is EA?
EA stands for Esophageal Atresia, which simply means a missing portion of the esophagus (feeding tube). It is one of five different types of EA/TEF which vary in physiology. It is a fatal condition unless it is treated surgically, because without an esophagus, one cannot eat or swallow normally. Elliot's type was severe and considered "long gap" due to his wide missing segment.
When was your child, Elliot diagnosed with EA?
I remember during pregnancy that I could hardly feel Elliot move. I never felt the flutter of hiccups coming from inside my belly. When I expressed my concerns to my doctor, she referred me to the high risk OB who followed my case until I delivered my son. My doctors were concerned about two things: the massive amounts of amniotic fluid I was carrying and their inability to see Elliot's stomach bubble on the ultrasound image. However, those two things alone don't necessarily indicate something is wrong, just that the chances were higher. When Elliot was born (at 37 weeks), nurses inserted a soft tube down his nose and it stopped short indicating a problem. Elliot wasn't officially diagnosed with EA until his first surgery on day one of life when surgeons could visualize the disconnection.
How many surgical procedures has Elliot braved?
In his nine months of hospitalization (in the NICU) Elliot had endured many surgical procedures. He's had three thoracotomies to attempt to connect his esophagus, a g-tube placement (as an alternative to feeding by mouth), an emergency surgery to correct an accidental stomach perforation, Nissen fundoplication, multiple dilations, and a multitude of others that are minor in comparison.
Where was Elliot treated for EA?
Elliot was treated at our local hospital for the first 4 1/2 months. Doctors made a few attempts to connect the esophagus but failed. During a scary recovery period after one of the failed surgeries, we med-flighted him to Boston. Children's Hospital of Boston had the only treatment center for the esophagus at that time. There we met our first family going through the same rare condition and the support we felt was overwhelming. We knew we had taken our son to the right place. We had stayed in Boston for the next 4 1/2 months while our son went through his final connection surgery which was successful. We had a team of amazing surgeons, nurses, and other support staff that took great care of him. We finally took our baby home for the first time nine months after his birth.
How is Elliot's condition today?
Elliot is doing remarkably well. He has consistently gained weight, which is always a struggle for these kids. Currently he has trouble eating certain foods and can experience "stuckies" or choking episodes. He has a characteristic cough that sounds like a seal at times and takes high doses of reflux medication. He continues to be followed by a large team of doctors, who are also very proud of Elliot's health. We consider ourselves very lucky parents.
What do you want people to know about EA and how it has affected your family?
No one knows why EA occurs. It only happens in 1 in 4,000 babies born in the US. Many of these babies also experience other birth defects or conditions affecting various systems in the body. Because of the rarity of this condition, some hospitals don't have a lot of resources to support families going through this long journey. At our home hospital, we felt like we were on our own lonely island. It wasn't until we personally connected with other families going through similar experiences that we felt support and encouragement.
What are Elliot's favorite hobbies? And has he mentioned what he wants to do when he grows up?
Elliot loves swimming, building with Legos, playing with Star Wars characters, and going to school to play with his friends. When he grows up, Elliot wants to be an inventor. :)
What is your idea of a perfect family day?
My perfect family day would be a relaxing beach picnic, building sand castles with both my kids and watching them laugh while splashing in the waves.
Thank you so much to Heather for sharing Elliot’s story and for those interested in learning more about EA/TEF and what they can do to get involved. Please visit the following links…
- Written by Designer/Founder of Bumble Collection, Jennie Lynn Johanson. She resides in sunny Orange County, CA with her hubby and two kiddies. She enjoys to bake especially when chocolate is involved and she can often be found in her craft room surrounded by hot glue and anything with sparkle.