Haishan Chen

My CHEO Story

My son was born in October of 2010. He came into this world very quietly with only one tiny weak wheezy sound. It was soon discovered that this esophagus wasn’t connected to his stomach but was instead connected to his lung. Further, a pulmonary artery had failed to develop, causing one of his lungs to be completely without blood flow after birth. The surgery needed to correct this caused vocal cord paralysis, which prevented any sort of vocalizations for quite some time. He also had a complex airway, which made it difficult for him to breathe or swallow. His eyes suffered from strabismus, his ears were only partially developed, causing severe and profound hearing loss, and his nose had Choanal atresia. Many of these issues would have cost him his life. We were so fortunate to have the CHEO professionals arrive to take my son Quinlan away that same day.

He was intubated and monitored around the clock. Quite a few doctors from many different departments were busy meeting together to come up with a plan for the highest priority surgeries. His life was saved because of CHEO’s actions.

When he was 2 years old, Dr. Kym Boycott found the gene responsible for his condition: a EFTUD2 mutation. he was then diagnosed with a newly discovered rare genetic disease named mandibulofacial dysostosis with microcephaly.
years later he is living happily each day even though he is still tube fed and has a tracheostomy to help him breathe. He has a global developmental delay but we can see the gains he is making each day! The CHEO complex care staff are really supportive and make sure his needs are met. It feels like CHEO is a second home.

Areas of Interest

  • Genetics
  • Rare Disease
  • Mental Health

Why I'm involved

I would really like to take this chance to give back to CHEO-RI by getting involved in the genetic rare disease study so that I may be able to provide some valuable insight. The reason why I have interest in Rare Disease and Anxiety is because my son has a genetic rare disease and at my current work place I encounter some cases of children having anxiety and some other mental health issues in their life.

Areas of Interest

My Role