About this story

In May of 2015, we were granted an unexpected gift.

I was in my third trimester when we were contacted by a videographer with the MUSC marketing team.  He reached out to our obstetrician’s office in search of a family whose unborn child had received a multifaceted diagnosis in utero. His office was looking to document and travel along with a family from pregnancy to birth and beyond, with the purpose of advocating for the new MUSC Shawn Jenkins Children’s Hospital.

I agreed to meet with him. We wanted to hear him lay out MUSC’s vision to ensure it would coincide with ours. I returned home that evening to relay everything to Stephen.

At first, we were reluctant. We were very open about Harper’s diagnosis, but were we ready to put our most intimate moments on display, moments of weakness we didn’t portray in public? As we continued the conversation, we weighed the pros and cons.

Initially, we were taken back to a particular memory, five minutes in time that would impact our outlook forever. We sat in a conference room with five physicians, as they explained the expectations for Harper’s life. One doctor spoke out about the feelings spina bifida children, specifically teenagers, face as they discover their differences. He talked to us about the possibility of depression. This was the first time we stopped to think about Harper’s emotions in all of this. From that moment, we vowed to hold on to every keepsake, letter and picture for Harper to reflect on her beginnings. She would be able to see the inspiration her life had on others, before ever entering this world.  What better way to fulfill this promise than to accept MUSC’s offer?

We pressed on. We decided we wouldn’t let Harper’s suffering go in vain. We would fight to bring awareness for her, for the families who shared their beautiful children and brought us back from our darkest times, and for the future families who we could pay it forward to. This documentary would bring that opportunity to light. We could educate the public about spina bifida and the many conditions which follow, all while honoring every family before us and to come.

Thus, filming began.

Never in a million years would I have thought we would gain so much more -- a new family, our MUSC family. After almost two and a half years, we’ve built lasting relationships we will cherish for a lifetime:  a midwife who held my hand through pregnancy and continues to follow Harper’s story; NICU nurses who still check in on her and are blown away by her development; pediatric nurses who know Harper by name; a devoted development team that endlessly supplies us with opportunities to share Harper to benefit fundraising efforts; a professor who allowed us to use her PT lab and performed assessments to get Harper the best therapist; and a videographer who has been by our side since Harper’s worldly debut.

Our closest relationships to stem from all of this are rooted in two visionaries with very different backgrounds but the same ideals about Harper -- a journalist and a neurosurgeon who believed our story could create a major impact. They have bestowed upon us some of life’s greatest wisdom, trust and memories. And being able to watch our children grow, laugh, play and love together has been the most rewarding of it all.

In closing, I would like to tell you about a mother. This mother is pregnant. She recently found out the gender of her baby and heard the baby’s heartbeat for the first time. In a total stranger’s office, she just received the news of her unborn child’s diagnosis. With her soaked face hidden in her clenched hands, these immediate thoughts pop into her head: Why me? How will I deal with this? Can I afford this? Am I strong enough to handle this?

That’s her. That’s the mother we hope to reach in the waiting room, as she scans a hard copy of Harper’s story, or as she frantically returns home to scour the internet and comes across Harper’s documentary. She finds hope. She finds reason. She finds her will. She and her unborn child are one of our many reasons WHY.

- Jenna Brown