"Baby Ethan" Edward Hilston was born six weeks premature on October 30, 2016 to his parents, Rochelle and Jared and his 4 year old, big sister Eliana. In Rochelle's third trimester she discovered that Baby Ethan was not developing compared to others, alarming physicians that he may be born with some under developed facial features or deformity. Upon his birth, Baby Ethan indeed had life threatening complications and has been diagnosed with an extremely rare genetic disease called Treacher Collins. Treacher Collins syndrome, also called mandibulofacial dysostosis, affects the development of the bones and other tissues of the head and face.
Ethan was born with no ears, a loose jaw bone, an enlarged nose with developed nostrils yet no airway cavities or passages, the inability to breathe apart from life support, or eat, or cry, or even open his eyes. He had severe pulmonary hypertension, jaundice, two blood transfusions, and a tracheotomy all within his first two weeks. Numerous medications have been administered and all seem to be helping, thanks to the wonderful doctors, nursing staff at John Hopkins All Children's Hospital in St. Petersburg, Florida.
With so many praying for Baby Ethan, he has demonstrated every day that he is a true miracle baby and fighting for his life since Day One! Today on his 2-week birthday, we are seeing slow but steady improvement. Baby Ethan has opened his eyes and is responding to touch. While we are jubilant about Ethan's progress so far, we have been told that this is going to be the beginning of a long, hard road and journey ahead. We know that Ethan will require 24 hour care, multiple surgeries, and continued testing to ensure that he is stabilized and ready to go home. We are hopeful and prayerful that Ethan will not have hearing loss, but a test will be administered in the ensuing weeks to determine this.
We have been told that Ethan will remain in NICU for the remainder of the year and spend the holidays there. This is going to be a trying time for the Hilston family and one that will require so much support and energy from family and friends and those that care to be apart of Baby Ethan's journey! We invite you to join us in prayer and positive thoughts and become a part of Ethan Edward Hilston's story. From this day forward, he is no longer their baby Ethan, but Our Baby Ethan [https://www.gofundme.com/ourbabyethan],
and we hope you will journey with us and become part of our extended family, bringing awareness and love to both this human interest story and widely-unknown syndrome!