Meet Preston

Born: 2018

Diagnosed: 2018

Preston's Story: Hi! I am Preston!


I was born April 19, 2018. I was very unhealthy in utero—so unwell that every birthday is a celebration of life. When my mommy was pregnant with me, she had a condition called Hydrops Fetalis which left her with a very high-risk pregnancy. Hydrops Fetalis is a condition in the fetus characterized by an accumulation of fluid, or edema, in at least 2 fetal compartments. I had fluid in both chambers of my lungs as well as facial edema. This left me to only have a 1% chance of survival, as they feared the fluid would compress my heart and force it to quit beating. They begged my mom to terminate me for weeks, but she refused. She got weekly ultrasounds at the Maternal-Fetal Medicine (MFM) clinic along with 1 dose of steroid injections to help assist lung growth. 

She was heavily monitored for Mirror Syndrome which could have been fatal to not only myself, but her as well, but she never gave up hope. The day I was born, I had a 50% chance of still birth. I was welcomed into the world with 25 health professionals in the operating room, ready to battle and help save my life, but I beat all the odds and was born healthy! I spent 3 weeks in the NICU, where I underwent lots of tests and scans. Before my discharge, my blood got sent away to Sweden for genetic testing.

I do have a few challenges such as, mild hearing impairment, nearsightedness, partial joining of my 1st and 2nd toes, gastroesophageal reflux, and feeding problems. I am also developmentally delayed in certain things but excel on some other age appropriate areas. Just because I have Cornelia de Lange Syndrome, doesn’t mean I am going to let it stop me from showing the world that I am still a person. I am capable of anything I set my mind to! I am nasogastric (NG) fed until my coordination improves and I am able to take in enough calories I need in a day, but I work very hard when it comes to feeding orally. I see lots of doctors and specialists and spend most of my time at clinics, hospitals and therapy sessions to help make my dreams become reality! Since I was a fetus, I have had plenty of doctors underestimate me, but I continue to prove them all wrong!