On October 16, 2010, my son Emmett became ill. He was coughing, lethargic, and had a fever with very little desire to eat. Concerned, my husband Michael took him to a local pediatric urgent care in our home town of Phoenix, Arizona. Emmett was assessed and sent home with the diagnosis of a cold or flu virus. As Emmett’s symptoms increased and my concern grew, I battled with my internal thoughts. Should I take him back to the doctor or am I over reacting? Two days later, I took Emmett to the pediatrician and he suggested that Emmett might have croup. My mommy feelings felt strongly that something else was wrong. While getting ready to leave, the doctor came to find me and strongly advised me to take him to the emergency department.
After a 10 minute drive to the hospital, Emmett was given a few breathing treatments and a chest x-ray was ordered. I will never forget the feeling that pierced through my body as I viewed the x-ray. A large round object was lodged in my son’s throat. What was it and how did I not notice him choking?! The doctor came in to explain that the item in Emmett’s throat was a button battery. The radiologist could even read the serial number. Where did this battery come from and how did Emmett get it? We later discovered that the battery came from the remote control to our DVD player. Emmett was immediately rushed to the children’s hospital. This is where our life-changing journey begins…
The button battery that Emmett swallowed burned two holes in his esophagus and into his airway. The location where the battery got stuck was only one centimeter above his fragile heart. We were told that the chances of Emmett surviving was fair and if he did survive the damage left behind would be astronomical. Emmett spent eight months of 2011 in the Pediatric Intensive Care Unit in Phoenix. Five attempts were made to reconstruct Emmett’s esophagus, leaving Emmett to rely on a gastric tube in his abdomen to receive his nutrition. Emmett could not eat by mouth anymore. His airway became weak and could not give him the support he needed to breathe on his own. One year later a tracheotomy cannula was inserted to help him breathe. In total, Emmett has undergone more than 30 surgical procedures. While the surgeries were life-saving, his lungs have been damaged due to long-term ventilation use and aspirated-induced pneumonia. And even to this day, Emmett requires ventilator support at night to help him sleep comfortably and safely.
After almost two years of treatment in our home city, his doctors suggested we go for a second opinion to the Esophageal Center at Cincinnati Children’s.
After a thorough evaluation at Cincinnati Children’s, the team determined that Emmett’s esophagus was not salvageable and that a complete removal and replacement of it were vital for Emmett’s overall health. The new esophagus would allow Emmett to be able to eat by mouth again and also prevent further aspiration to his lungs that the strictures were causing.
A few months later Emmett underwent a 14-hour surgery for colonic interposition, where his entire esophagus was removed and replaced with a portion of his colon. His surgeon, Dr. von Allmen, needed to enter the side of Emmett’s chest and neck to be able to remove the old and damaged esophagus. Nearly a foot of Emmett’s large intestine (just below the small intestine) was removed and configured through Emmett’s body to be the new esophagus. This animation illustrates the type of esophagus replacement surgery Emmett had (except that he does not have congenital esophageal atresia).
Although using the colon as an esophagus is a rare procedure, it reduces many risks that a donor esophagus might produce. For instance, Emmett does not need to be on anti-rejection medications because the tissue used was already native to Emmett’s body.
Emmett’s recovery time was two weeks shorter than anticipated and nothing short of a miracle… our family made it home two days before Christmas! I recently spoke about our experience at Cincinnati Children’s in a Tell Me A Story.
Emmett today is a completely different child since his esophagus replacement surgery. He is attending preschool and making new friends. He enjoys attending his Sunday school class and loves to try and sing along during the singing time. His energy level has improved ten-fold and he is exploring the world by running, jumping and wrestling around with his five-year-old brother, Ethan. Emmett has been sleeping longer and more consistent hours during the night, needing minimal suctioning through his trach. His lungs are improving each month and we hope to be able to schedule reconstructive surgery on Emmett’s airway in the next year or two.
The most exciting aspect of Emmett’s new esophagus is that he is finally eating by mouth! An activity Emmett has not taken part in for over two and a half years. It was not an easy start but after a lot of hard work with his swallowing therapist, Emmett is enjoying scrambled eggs, bananas, spaghetti, soups, crackers and much, much more. Our family is so grateful for the medical professionals at Cincinnati Children’s – especially Dr. von Allmen and his nurse practitioner Marilyn Stoops. They have worked so hard to change our family’s life!
As a mother I replay the morning we noticed Emmett’s illness over and over in my mind. How did I not know? If I only paid attention to the kind of batteries the remote controls required! I have now come to terms with it: replaying the past will not fix the future. To help with the healing process, my husband Michael and I started a non-profit organization called Emmett’s Fight Foundation. Our goal is to educate families, parents, caregivers and grandparents about the dangers of button battery ingestion and provide suggestions on how to keep one’s home safe from button batteries. More information is available on these websites:
www.emmettsfight.com
www.thebatterycontrolled.com
www.aapcc.org
Editor’s Note: Emmett had surgery again on August 27th, 2014 to reconstruct his airway. This will enable him to work on his speech, a step that will put him on the right path to attend kindergarten next year. And on December 17, 2014 Emmett was able to have his tracheostomy removed, allowing him to play soccer.
I just wanted to say you r in my prayers-my husband has a trache and feeding tube due to throat cancer. I can’t imagine a youngster and kuddos to you for insisting on finding out what was wrong. We painted at Childrens Hospital for several years and they are fantastic-I am sharing your sons’ story to give a heads up to other parents as a warning. God Bless you !!