Story by Jason & Trisha Choe
We always envisioned that typical normal pregnancy that we see around us. For me, there was the excitement of monthly bump photos, shopping for baby clothes and baby gear, the baby showers and decorating the nursery. And for Jason, he was just excited to hold a baby for the first time in his life. But all of that changed at my 11-week appointment when the genetic test came back positive for a genetic disorder. We were both in shock and disbelief. After more in-depth testing, it was confirmed that our baby had Trisomy 18, also known as Edward’s Syndrome. This news overshadowed the fact that we were having a baby girl.
Trisomy 18 is a genetic disorder in which babies are born with 3 copies of the 18th chromosome instead of 2. Unfortunately, the statistics for T18 are not favorable: 95% of fetuses don’t survive to full term. With the ones that do, 50% live beyond 1 week old, and only 5-10% survive beyond 1 years old.
Our excitement diminished into grief and instead of sharing our pregnancy, we kept the milestones to ourselves, the pictures for ourselves, and mourned the unknown. We didn’t set up a nursery, or paint the walls, or even buy a crib since we weren’t sure what to expect. I’m a woman of faith, so I turned to God and had Him take the wheel on our journey. We leaned on our families and close friends for support, found Trisomy 18 support groups and met with medical professionals, like a Nurse Navigator who specifically worked with high-risk pregnancies, a pediatrician specializing in medically fragile kids, Hospice Austin, and Dell Children’s Palliative Care team.
We weren’t sure what to expect with Julia’s birth. After consulting with the medical team, we signed a DNR effectively allowing her to pass peacefully if the signals indicated a less than favorable outcome. All we wanted was to hear her cry when she entered the world. At 10:04 AM, Julia Madison Choe was born 4 pounds, 4 ounces and came out wailing with a strong pair of lungs, requiring little to no interventions. She was a “feisty” little girl. We had no expectations as we were now on Julia’s time. A minute turned into an hour, which turned into a day, and 9 days later we were able to bring Julia home. We celebrated and cherished each and every milestone that Julia would be willing to share and learned to become her caregivers. Each day transitioned from surviving to thriving.
The journey has been far from easy. At month four, Julia turned ill. We thought this would be our final moments with her. Her vitals were poor, she struggled breathing, and her skin tone had turned blue. Given her low odds of survival, we were once again presented with the DNR form to sign. One thing we quickly learned is what a relentlessly strong fighter Julia is. Even after having gone through extensive heart surgery, Julia still presented us with her infectious smile. We soon built a list of doctors and specialists to help us manage her medical care, and teams of therapists to build her confidence and strengthen Julia into who she is today.
Continuing to hit milestone after milestone, Julia is now 6 ½ years old, the best big sister to her brother, Winston and sister, Olivia and is currently in 1st grade. She is helping to rewrite what it means to live with Trisomy 18. She loves going to school where she has her own fan club. Her school has been extremely supportive of Julia, accommodating the play yard to be more inclusive, having her join field trips, and even helping with her feeds via g-tube.
When Julia was referred for Make-A-Wish, we thought of some options that would benefit Julia specifically. We’ve been blessed to take her on trips across the US, but nothing really hit home for us. Thinking back, one thing Julia loves are books. Turning a page of a book was one of the first skills she learned on her own. She loves the pictures, the stories, and loves being read to. So, that was it! A book featuring Julia’s life as a special girl living with Trisomy 18.
The amazing Make-a-Wish team worked tirelessly to find us a writer and illustrator to walk us through the whole process. “Julia’s Like Me” is a book about Trisomy 18 awareness and inclusivity and tells the story of a day in the life of Julia. While she may seem different to those that don’t know her yet, you soon realize that she shares a lot in common with others and that Julia is indeed like me.