JADE’S STORY:
Jade's journey started way before she was born. When I was 20 weeks pregnant, my husband Joe and I went in for what we thought would be a routine ultrasound. During the ultrasound, doctors discovered our baby was measuring very small. By small, she was only in the third percentile. They were unable to get clear pictures of her heart, so they referred us to Mercy’s Prenatal Center in St. Louis for more tests.
We’ll never forget November 13, 2015. That’s the day doctors discovered our little peanut had a congenital heart defect. In order for them to rule out any chromosomal issues, I underwent an amniocentesis. This was by far the hardest day of our lives…or so we thought. We waited almost two weeks to get all the results back—hoping and praying around the clock that our baby was not facing any other health complications. Luckily, we found out Jade tested negative for all chromosomal issues. This provided some relief, but we knew we had a long way to go.
Doctors later determined that along with the congenital heart defect, the blood flow from the placenta was not good and attributed that to her lack of growth. The weekly monitoring appointments and looming unknown future were hard to bear and comprehend. When you find out you’re pregnant you celebrate each day and see your belly growing—you don’t think you’ll be one of “those mom’s” who has complications—until it happens to you. Then with each movement or feeling, you wonder if something is about to go wrong—or if a test will come back with the results you can’t fathom hearing.
When I was admitted to the hospital on December 28, 2015—doctors and nurses let me know that if I delivered, Jade would be too small for her heart surgery and would not be able to survive. Those words felt like a ton of bricks crashing down on my chest. Luckily, our daughter continued to amaze us and she kept growing week by week. She was moving all the time and making sure we knew she was going to fight to stay alive.
By February, she was measuring big enough and had crossed the threshold of 33 weeks so I was admitted to the hospital so her heart could be monitored closely. Then, February 25th… one day shy of being 35 weeks along, was when Jade’s story truly began. Doctors made the call that in two hours they would perform a c-section and our sweet baby girl would enter this world. It all happened so fast. I remember getting wheeled into the delivery room and within minutes she was in our arms. When Jade came out she was crying the sweetest cry I have ever heard. Joe cut the cord and we gave her a bunch of kisses before she was whisked away to the NICU. Born at only 2.9 pounds and 15.25 inches, she’s been resilient since she entered this world. While we knew there was a long road ahead, it was comforting to know she was able to breathe on her own because her lungs had developed.
Doctors diagnosed our baby girl with Pulmonary Atresia with Ventricular Septum Defect, listed under Tetrology of Fallot. Only one in every 10,000 babies are born with this rare heart condition. Babies born with this condition often have a bluish skin color, because their blood doesn’t carry enough oxygen, they have trouble breathing and eating, and are extremely sleepy. Because of her ductus arteriosus development, Jade was immediately put on special medication to keep her blood flowing. Unfortunately, the medication caused her to stop breathing so she was intubated and placed on a ventilator. During that time we went on a roller coaster ride of trying to get her medicine right and keep her ductus arteriosis open.
Unlike most parents who get to hold their babies right away and head home a few days after delivery, we had to wait a week to hold our little girl. You look at this tiny three-pound baby and feel more love than you ever thought imaginable. While we held her, several nurses were on standby and machines were beeping. That moment was something we’ll remember for the rest of our lives...and that was just the beginning.
Many obstacles followed Jade after she was born. She has had multiple stint procedures to help her heart as well as four open-heart surgeries. She struggled to gain weight and ended up getting a G-tube. After her second open-heart surgery, Jade suffered a cardiac arrest which led to a hypoxic brain injury and a placement of a trach. After her cardiac arrest, Jade was placed on ECMO, which saved her life. August 4th, 2016, forever changed our lives as this was the day that our seemingly ‘typical’ baby with a heart defect was taken from us.
We went from being parents of a child with a heart defect that smiled, looked at us, made noises, held her bottle, and sucked her thumb, to parents of a child who may never again do these things. During this catastrophic setback, our love for her and our will to fight for her only grew stronger. Today we think about that night and could lose ourselves in how tragic it was, but we try to focus on what Jade has taught us about unconditional love, the appreciation for life, and what it means to be a parent.
Jade didn’t enter our home until she was 463 days old. Born at Mercy Hospital, transferred to Cardinal Glennon, and then to Ranken Jordan Bridge Hospital, our baby girl spent the first 15 months of her life in medical facilities. While we were elated to finally bring her home, making that transition was daunting to say the least. We had to learn about insurance, waivers, organization of equipment, Durable Medical Equipment (DME) companies, nursing care, the list goes on. Simply making sure she is breathing, eating, and comfortable was a stress in and of itself.
After a year of being home and realizing what we went through to get her home and keep her home safely, we knew more resources were needed to properly support and empower parents. It was at this point that we started thinking about one day creating a Foundation, so parents didn’t have to feel alone in this overwhelming process.
Jade is now six years old and she has taught us more about life in her years then we have learned in our 30+ years. She taught us what it means to love someone even if they can’t say it back. She has taught us resiliency, patience, and appreciation for life itself. She has inspired us to create Jade’s Helpful Heart Foundation, a nonprofit in her honor.
Despite Jade’s difficult journey into this world—both then and now, she is perfect to us. This is our family. We have no choice but to have faith that Jade will overcome the obstacles before her and be able to live and enjoy all that life has to offer. Jade is an amazing big sister to her sister Mila and brother James and continues to teach life lessons only she is capable of sharing.
While this is our nonprofit’s first year, we are committed to making a difference, one family at a time. It’s our hope and our dream that Jade’s Helpful Heart Foundation will be able to have a lasting impact on each family we connect with. Each day with Jade, we’re inspired to make what seems like the impossible, possible.