Our son, the mighty Shaw Richter, was born thirteen weeks premature (27 weeks gestation), weighing only two pounds. Shaw spent 122 days in Novant’s Hemby Neonatal Intensive Care Unit (NICU) in Charlotte, NC. He survived a stroke at birth, hearing loss, multiple brain surgeries, twenty-two spinal taps, meningitis, paralyzed vocal chords and more in those first 122 days. He graduated the NICU with a diagnosis of hydrocephalous, narrow airway disorder, chronic lung disease, MRSA, and a permanent device in his brain that drains excess fluid from his brain to his abdomen.
There were many times during Shaw’s NICU days that he was on a ventilator, a device breathing for our son, because his lungs were not strong enough due to his prematurity. Shaw was even ventilated during cold and flu seasons for years, after he left the NICU. The common cold would inflame the scar tissue from previous intubations and his airway would begin to close. Within moments of hearing Shaw gasp for breath, we would race for closest hospital in search of steroids and oxygen. A simple procedure like ear tubes to help his hearing years later, left us in the bowels of the hospital as the Anesthesiologist ‘bagged’ our baby (squeezing air into Shaw’s lungs before he could be hooked up to life support) on a gurney, as we were calmly escorted from the Outpatient Surgery Center to Intensive Care.
Shaw’s health concerns didn’t stop once we brought him home from the NICU. Due to his apnea, Shaw wore a tiny sensory strap around his little body that would alarm when he stopped breathing – which was often. When Shaw stopped breathing, we had seconds to ‘stimulate him’ and remind him to take a breath again. Stimulation included picking him up or rubbing him with gentle vigor to ensure he remembered air. Shaw was attached to the apnea monitor (picture a leash to the probes around his chest, down his onsie and tethered to a computer with about four feet of slack). If you picked up Shaw, you slung the monitor over your arm. It was an extension of him. He wore the monitor for a year after coming home from the NICU (and the PTSD from the alarms left Michael and I the ability to clear a room in three steps at the ding of a microwave).
That wasn’t all. When we brought Shaw home from the NICU, there was an eager (and busy) big brother, only 14 months older. Our family spent two years in isolation avoiding germs while managing doctors appointments, therapy evaluations, endless tests and disappointing diagnosis. What we didn’t understand after leaving the NICU was the amount of time, energy, tenacity and dedication it was going to take to be an advocate for our child. For the first time, we were a single income household and learned that our private insurance would be exhausted within two months for much needed therapies for our son. We would spend thousands upon thousands of dollars out of pocket to ensure our son received the care he deserved.
Michael and I learned that there were many families in our new world that could not afford the care their NICU graduate needed to maximize their developmental potential and quality of life. With our hands thrown in the air, through disgust and despair we would plead, “Why are these children given a limit to the resources they need? Why are families having to choose the therapy they receive based on cost?”
On World Prematurity Day 2012, Michael and Candace Richter gathered their friends and family and quietly launched Bee Mighty in the living room of a close friend. Bee Mighty, a new fund under the Novant Healthcare Foundation, was our small effort to not only draw awareness to prematurity and what life is like inside the NICU but also how having a medically fragile child could happen to anyone. Moreover, Bee Mighty was founded through the challenge of financing resources your child desperately needs to reach his/her developmental potential. Bee Mighty pays for therapy and/or equipment for these miraculous babies that already had such a hard start to life.
This launch event inspired dozens more to get involved locally and support our vision for Bee Mighty. We built Advisory Council, who in turn built committees and within a year, we funded the first Bee Mighty family.
As the years progressed, our signature event, Bee Something for Bee Mighty, was born and continues to raise over 100k each year for Bee Mighty. We developed instrumental partnerships with the Charlotte Hornets, Novant Children’s Hospital, Levine Children’s Hospital, large and local corporations, Pediatricians, Specialists, as well as reputable therapists and equipment providers. We even found the tallest preemie, Michel Kidd-Gilcrest, Charlotte Hornets Forward, who became Bee Mighty’s ambassador, hosting multiple Bee Mighty grant recipients at The Hive.
Heather Hucks joined Bee Mighty in 2013. She shared Candace and Michael’s vision after the birth of her 24 weeker, Tucker. Heather felt empowered to forge a path for other preemie families staying intimately connected to The Ronald McDonald House and building a private waiting area, loving called, “Tucker’s Room” for Novant’s NICU-only parents.
Together, Candace and Heather have been at the helm paving the way for NICU graduates to ensure families have access to the therapy and equipment their baby needs. In 2017, Bee Mighty will have provided over 200 grants to families in the Greater Charlotte region (NC & SC).
Today, Bee Mighty is a 100% volunteer-run organization. Our mission is to provide funding for medical therapy and equipment to NICU graduates.
To read more about the Richters, their family and their full journey, please follow: Mighty Shaw Blog