Ethan Vance’s Journey | Down Syndrome Awareness
We are so excited to be able to have Deb on the blog today sharing about their journey with their son, Ethan, in honor of Down Syndrome Awareness Day! Ethan & the Vance family share a special place in our hearts as they are equivalent to family!
Enjoy reading about their journey!
Total shock is the best way to describe how my husband and I felt when we found out we were expecting our third child!
My name is Debra Norwood Vance. My husband Jason and I are the proud parents of three beautiful children Sarai (age 19), Jason II (age 17), and Ethan (age 8).
In 2013, our home was bustling with our two beautiful children Sarai and Jason who were ages 9 and 8 respectively.
Like many of you, we were living the typical busy family life...balancing careers, church, school, and sports. Jason and I were in the midst of an insightful 12-week couple’s seminar at Liberty Baptist Church entitled “Marriage: Up Close and Personal”. Apparently, we truly enjoyed the seminar because six weeks later we found out we were pregnant! What were we thinking?!!?
At first, things with my pregnancy were progressing along nicely, but since I was in my early 40's and not as young as I used to be, my doctors considered me to be "at a higher risk" and were extra attentive to me and the baby. Shortly thereafter, the doctors discovered “a marker” on the baby’s heart and confirmed that our baby would be born with Trisomy 21 or Down Syndrome!
Hearing that news rocked our world, but since GOD created our baby we knew HE had big plans in store for him. I’m here to tell you that there is nothing “down” about Down Syndrome. It’s simply named after the doctor who discovered it, Dr. John Langdon Down. He discovered that people with Down Syndrome have a third copy of the 21st chromosome yielding a total of 47 chromosomes instead of the typical 46 chromosomes that most people have.
Our son was born two months early via emergency C-section on September 8, 2013 at Sentara Norfolk General Hospital with two holes in his heart and an accumulation of life-threatening fluid within his chest cavity. We named him Ethan Alexander Samuel Vance which means “Strong Defender of God”. We only
had a moment to glance at him before he was whisked away to the Neonatal Intensive Care Unit (NICU) at the Children’s Hospital of the King’s Daughters (CHKD) in Norfolk, Virginia. By the time we saw Ethan again, he was hooked up to lots of wires, tubes and on a ventilator. For the next month, all we could do was watch and pray over him in his isolette. Eventually the wires, tubes, and machines started to disappear, and we finally got to hold and hug our Ethan! We were so thankful to GOD!
Ethan’s journey and ours was only just beginning. He remained in the hospital for a total of five months. With medical clearance, I went back to work and with two children in elementary school, we tended to our lives as usual, all the while balancing careers, kids, church, sports, and a newborn in the NICU. My husband and I would work during the day, and take turns visiting Ethan at night. Those days were long, and our nights were not easy as we longed to bring Ethan home. We were so grateful for the numerous prayers we received each day.
With the fluid in Ethan’s lungs gone, the doctors informed us the two holes in Ethan's heart were causing him to breathe at speeds of up to 100 breaths per minute. At two months of age, it became clear to them that Ethan needed to have open heart surgery. Yet, weighing in at only 6 lbs, Ethan was not big enough to successfully endure the surgical procedure. So, for 24 hours a day 7 days a week, the doctors fed him through a tube in his nose. It took two more months before he finally gained enough weight to be able to endure open-heart surgery.
Dr. Benjamin Peeler, a Pediatric Cardiologist on loan from Levine’s Children’s Hospital in North Carolina informed us that Ethan (weighing in at a whopping 8 lbs) was ready for his open heart surgery. Dr. Peeler asked us for permission to take Ethan to his hospital for open-heart surgery. Stepping out on faith we agreed, and shortly after New Year’s Day Ethan and I were medically transported via plane to Levine’s Children’s Hospital in Charlotte, North Carolina.
With a successful procedure and his heart completely repaired, one week later Ethan returned to CHKD. It was time to tackle feeding. Unfortunately, Ethan still couldn’t get the hang of drinking from a bottle so the doctor’s placed a gastrointestinal tube in the left side of his abdomen and sent him home with instructions on how to feed him. I began to wonder if he would ever eat by mouth.
With a referral to Early Prevention and Intervention for Children (EPIC) program, Ethan began receiving in-home therapy services. Ethan received Occupational and Physical Therapy weekly in our home. The therapists who came to our home taught Ethan and our family ways we could support his development and answered all of our questions. Under the guidance of his therapists, Ethan eventually mastered tons of milestones. He learned drink from a bottle, eat from a spoon, feed himself, and eat everything from chicken nuggets, pizza, and even popcorn! He also learned to crawl, walk, and even run!
Today, Ethan is now a delightful and very busy 8-year-old third grader who loves to go to school, watch Blippi videos on YouTube, and eat chicken, rice, and french fries. He continues to receive weekly Occupational, Physical, and Speech Therapy services, and has even benefited from receiving Applied Behavioral Analysis (ABA) Therapy Services. Ethan has a mild conductive hearing loss, uses his speech skills and American Sign Language to communicate. He’s one of the 2020 Nothing Down Ambassadors for the organization called NothingDown.org and recently earned a gold medal at the Special Olympics Virginia State Basketball Championships. Ethan is a blessing to his family and truly a “joy” to all who meet him! Wanna see more of Ethan? You can follow him on his Facebook page entitled En”JOY”ing Ethan where he hopes you can find a little “joy” in your journey each day too!
Thank you!
