Mom Shares Story of Son’s CDH, RSV

Since her son Tobias was born, Sophia Rincon has had to embrace her new role as medical mom. According to an article in KENS5, Tobias was born with congenital diaphragmatic hernia (CDH), a rare diaphragmatic defect. This caused his abdominal organs to crowd his chest cavity, leading to his left lung being underdeveloped. More so, Tobias’ condition meant that he struggled with adequate immune function. To ensure his safety and maintain his health, Tobias spent around six months in the NICU following his birth.

Since Tobias returned home, he has had to have different surgeries and procedures to address his hernia. Sophia explains that the care needed for Tobias can be difficult; she left her job to take care of Tobias and her other children. Unfortunately, Tobias contracted respiratory syncytial virus (RVS) in October. The 13-month-old is now spending at least one month in the hospital to recover. He underwent a tracheotomy surgery on October 21, 2022 to provide him with more respiratory support. 

Sophia is hopeful that her son’s condition will improve in the future and that he will live a happy, healthy life. In the interim, she and her husband Gonzalo are doing all that they can to ensure that all of their children are getting the love and care that they need. If you would like to contribute to the cause, you may donate to the Rincon family via their GoFundMe page to assist with any necessary expenses. 

What is Congenital Diaphragmatic Hernia (CDH)? 

As described above, congenital diaphragmatic hernia is a rare condition characterized by a diaphragmatic defect. The diaphragm helps separate abdominal organs from organs in the chest. In CDH, the diaphragm is either absent or partially formed. As a result, the abnormal opening (hernia) allows the stomach and intestines to move into the chest cavity. This can cause pulmonary hypoplasia and other health issues. Doctors are unsure what causes CDH, though a blend of environmental and genetic factors are believed to play a role. Symptoms can include:

  • Rapid heart rate
  • Fast and/or difficult breathing
  • Cyanosis (blue color of the skin and lips)
  • Abnormal chest development (one side larger than the other)
  • A “caved in” appearance of the abdomen
  • Retching, gagging, or vomiting
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

Share this post

Share on facebook
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email