Hazel's Story

What condition was your child born with?

Hazel has Oropharyngeal Dysphasia also known as Pediatric Feeding Disorder. She was diagnosed at 3 months old after she went unresponsive two different times while sleeping and stopped breathing both times, requiring her mother to perform CPR to bring her back. 

Q: What were/are some of the biggest challenges that came with the diagnosis?

The biggest challenges includes not being able to feed her the normal foods and textures one would expect a one year old to be able to have (meaning no ice cream as it melts 😭). When she doesn’t have a feeding tube in, she passed as “normal” so we have a difficult time getting others to understand that she isn’t “normal” and she can’t just have what everyone else is.

Q: How has the diagnosis impacted your day-to-day life?  

Our day to day takes much more time and effort to carefully plan meals and foods she can eat. We need to bring food and medical grade thickeners for liquids everywhere we go. When she has a feeding tube in we have to bring extra supplies and know which local hospitals can treat her if she has an emergency.

 Q: What do you wish other people would know about your child’s medical?

Pediatric Feeding Disorders as the larger grouping are not rare, 1-37 children have them! Feeding your child through afeeding tube, can seem scary, but safely eating is so worth it!

Q: In what ways has your child inspired you?

Throughout the numerous hospital stays, ER trips, and countless procedures and tests, she has remained a happy smiling baby! She brings so much joy to us and her medical team!