#WeAreClimbers

My #HEaR story revolves around my daughter, who was born with an extremely rare genetic condition, and who has taught us the value of perseverance and perspective. It’s long, but I hope you enjoy.

My husband and I made our way through the halls of the NICU. We spotted the familiar bear on the wall as we approached our daughter’s unit- Bear Pod, that’s where the cardiac babies stayed. We quickly made our way to the back of the room, where our daughter, Addie, laid in her crib, happy, as always. Having been away from her for a night, my arms ached for her warmth. As I swooped her into my embrace, Addie’s medical team approached us. “We found something,” they said before I could steady myself into a chair. “Adalynn has a rare chromosomal disorder, Trisomy 9 Mosaic (T9M). She’s the first case we’ve had at our hospital. We don’t know much about this condition, but…” they took a short breath, “she’s not going to make it to her first birthday.” I sat stunned. My face grew hot with anger. After everything we had been through, I knew deep in my heart this wasn’t her fate. I stared back, tearless and determined. “OK,” I said, “but you’re wrong,” I thought.

We had discovered Addie’s heart condition early on in my pregnancy. During those early screenings, we also found Addie had ecogenic bowel, a precursor to a genetic disorder. But after our genetic tests came back negative we dismissed the idea. We were monitored regularly by specialists, knowing preterm labor was a strong possibility. At 33 weeks Addie stopped growing, so with our care team’s support, we welcomed our 3lb 3oz baby.

Addie went straight to the NICU. In those early days, I spent every waking hour by her isolette, taking meticulous notes and being an active member of her care team. Back then, I thought I knew what to expect. Afterall, I was a seasoned NICU mom, having spent two weeks in the NICU with our firstborn, now 3. But as the weeks flew by, Addie’s milestones were never met, and her health continued to deteriorate. At 4 weeks of age, and not yet full-term, we decided to transfer Addie from our local hospital to a children’s hospital in the Houston Medical Center for a heart procedure. On the way there her heart rate and oxygen dropped. I watched her turn blue and stood silently by as the paramedics intervened. I was in shock. Little did I know, it was the first of several instances I would witness over the next few months. There is nothing that can ever prepare you for those moments.

At her new hospital, the team questioned the results of our in utero genetic tests and pushed for further genetic testing, which ultimately led us to her diagnosis. We’re fortunate in many ways that the doctors were willing to get additional testing done and that we were able to get answers early on. But not long after receiving her diagnosis did her medical team begin to treat her differently. Despite medical evidence that suggested her problems would be mostly resolvable, their strategies and efforts focused on the limitations literature outlined for her condition. The medical team discussed discharge, hospice care, and recommended forgoing treating her heart condition. I later learned from other T9M parents that children with rare diagnoses are often considered incompatible with life, and are sometimes discriminated against by encouraging parents to accept life-threatening conditions rather than attempting to treat them. Within days of her diagnosis we decided to push for a transfer and once again moved Addie to a different hospital.

At the new hospital, Addie became a candidate for heart surgery. The procedure was invasive and required a sternotomy, but was her best hope of preventing congestive heart failure. As she began her 8-week recovery, the effects of the pandemic began to infiltrate our city and hospital. New rules went into effect, and only one guardian was allowed to visit for the duration of the stay. Two days after Addie’s surgery, my husband kissed our daughter goodbye, not sure when he would be able to hold her again. Family stepped in to support us as our son’s preschool closed and my husband returned to work as a law enforcement officer. I spent my days driving between the hospital and my in-law’s home; each day dividing my time between our two children.

Over the course of another month, Addie continued to check off all the boxes for going home- except for one, oral feedings. It became increasingly obvious that she would need a feeding tube, so once again we opted for another procedure- insertion of her Gtube. This became Addie’s final hurdle before coming home. Before we knew it, we were strapping her into her car seat, smiling nervously behind our COVID face covers, ready to take her home and reunite our once-fragmented family (see video of our son seeing his sister for the first time in over a month).

I wish I could say things continued to improve immediately after this, but as we settled into life outside the hospital, we were forced to face the repercussions of no longer living in a vacuum. The socio-political climate, public health crisis, and growing grievances with the police only aided in shifting our situation from complicated to overwhelming. Shortly after Addie’s homecoming, police rioting began to take place across our nation. My husband’s job transitioned from a routinely 8 hour shift to a mandated 12 hour shift, every day, without days off. Additionally, nurses were in high demand everywhere, so finding nursing support for our daughter, who required constant attention and occasional intervention became impossible. Not shortly after, I too had to return to work. I became the primary, and many times sole caregiver for my children, while balancing my job.

I firmly believe that there is always triumph in tribulation, if you’re willing to adapt and ask for help. So we did. We became open to change. We let go of control. We asked for help both physically and spiritually, and through this we uncovered hidden blessings. Addie grew stronger each day. She blew doctors away by reaching milestones they never anticipated she would reach. Each day we tried new things to help her, all the while keeping a tentative eye on her own boundaries.

In total, Addie spent 105 days in the hospital and underwent 3 surgeries before she was 4 months old. Today she is 10 months old and defying odds: sitting, rolling, babbling, dancing, and even eating some. Each day, Addie continues to set new standards for children with Trisomy 9 Mosaic. She brings joy and happiness to our hearts and to the many lives she's touched.

There continues to be little science on Addie’s condition, so we launched a social media campaign, RareGeneLife, to bring hope to others who might be given outdated or misleading information, and to advocate for and normalize conditions and medical complexities such as Addie’s.

The journey has been long and hard, but our new-found gratitude and perspective is priceless. We firmly believe that God exposes us to difficult experiences in order to build our endurance and strengthen our fortitude. Our daytime nurse once told us “there is no hill for a climber.” We became climbers.

Learn more about Ronald McDonald House here https://corporate.mcdonalds.com/corpmcd/our-purpose-and-impact/community-connection/rmhc/Here-for-RMHC.html).