Apr 05, 2022
thriving with a complex condition
During a routine anatomy scan, Mindi and Josh Ashworth learned that their baby’s heart was located on the right side of his chest instead of the left. Mindi’s maternal-fetal medicine specialist referred them to Dayton Children’s Hospital for a cardiology consultation.
Christopher Bugnitz, MD, pediatric cardiologist at Dayton Children’s performed an echocardiogram and confirmed the baby had a condition called dextrocardia. Dextrocardia is a rare congenital disorder where the heart is located on the right side of the body. When the heart points towards the right side of the body, it can potentially cause issues with other organs or the digestive tract. At the time of the echocardiogram, it seemed that the dextrocardia was likely isolated, and the baby’s heart appeared to be functioning properly.
uncovering more concerns
In late March 2020, Mindi and Josh welcomed their baby, Bennett, into the world. Not only was he born at the beginning of the COVID-19 lockdowns which presented its own set of concerns, but Bennett also showed signs that he was battling more than just dextrocardia.
Mindi and Josh learned quickly that Bennett was born with the inability to swallow. His upper esophagus ended in a blind pouch, making it impossible for him to eat. Additionally, the bottom portion of his esophagus was connected to his trachea, creating a direct path for his stomach contents to enter his lungs. This condition is known as esophageal atresia with tracheoesophageal fistula (EA/TEF). Bennett needed surgery to repair the defects so he was transferred to Dayton Children’s Hospital.
“Although we were extremely anxious about Bennett’s diagnosis and what was in store for him, we were confident that Dayton Children’s would provide him with excellent care,” said Mindi.
When Bennett was just one day old, Oliver Soldes, MD, pediatric surgeon at Dayton Children’s, skillfully performed his surgery. Following a successful surgery, Bennett stayed in the neonatal intensive care unit (NICU) for 18 days healing, growing and learning to feed.
During this time, it was also discovered that Bennett has VACTERL association, a cluster of defects along the body’s midline that occurs randomly during development of the embryo. VACTERL stands for vertebral defects, anal atresia, cardiac defects, trachea-esophageal fistula, renal anomalies and limb abnormalities. Babies with VACTERL association usually have three or more of these anomalies. Bennett has some mild vertebral defects, dextrocardia, a moderate atrial septal defect (ASD), EA/TEF, severe tracheomalacia and a horseshoe kidney.
life after diagnosis
Following his stay in the NICU, Bennett was able to go home. But due to his complex medical conditions, caring for a newborn would be different this time around for Mindi and Josh.
Bennet has some esophageal dysmotility and his connection site had a narrowing that resolved with an esophageal dilation. He is also likely to suffer from acid reflux (GERD) longer than most children. Bennett sees Michael Bates, MD, PhD, division chief of gastroenterology and nutrition for his GERD. He is on proton pump inhibitors (PPI) and medication to increase his motility, appetite and gastric accommodation. “Dr. Bates has been phenomenal to work with to manage Bennett’s esophageal conditions,” said Mindi. Bennett also sees Leah Otte, feeding therapist, who has encouraged him to become more adventurous with finger foods, as his diet mostly consists of purees and thickened liquids.
Currently, Bennett’s heart is not causing any issues, but he may need to have surgery to repair his ASD to prevent future problems. He is also very unlikely to outgrow his severe tracheomalacia so he will continue to follow up with Dan Evans, MD, division chief of pulmonary medicine. As an added precaution to keep pneumonia and lung damage at bay, Bennett had a posterior tracheopexy and tracheal diverticulum resection.
Bennett is now in daycare so he has been exposed to his fair share of daycare illnesses. The good news is that he is now handling respiratory infections like a typical kid! Although the family still has challenges to work through and future surgeries on the horizon, they are so pleased with Bennett’s progress.
“Seek support from friends, family and Dayton Children’s Hospital! There are some great support services and programs available at Dayton Children’s, including the Parents Encouraging Parents program, translator services, chaplains for spiritual support, and the Ronald McDonald Room. Also, be sure to ask to speak with a social worker, who can help with physical, emotional and financial support when coping with a difficult diagnosis,” recommended Mindi. “Additionally, never feel ashamed to ask health care providers to repeat information or further explain. You are your child’s biggest advocate, and the health care workers want you to be educated and on board!”