A Mother’s Determination: Catching Retinoblastoma on Film
Being a vigilant parent often involves observing and documenting unusual occurrences in a child’s behavior or appearance. This is exactly what one mother did when she noticed a peculiar reflection in her son’s eye. Little did she know that this observation would lead her on a journey to discover her son’s diagnosis of retinoblastoma, a rare form of eye cancer. In this article, we explore the mother’s relentless pursuit of answers and her ultimate triumph in getting her son the necessary medical attention.
On January 9th of 2023, while playing with three year old Brooks, Kourtney Hiatt noticed a strange reflection in his eye. Every time he looked down, there would be a fleeting flash at the bottom of his pupil that lasted only a millisecond. This initial occurrence left her feeling perplexed and concerned. Determined to understand what was happening, she decided to capture this phenomenon on film.
Having recalled a talk show segment about eye cancer and the distinctive red and white eye reflection associated with it, Kourtney attempted to film her son’s eye using a flash and video. After multiple attempts nightly, she finally managed to record the glow about a week later.
The very next day, she began reaching out to ophthalmologists in the Palmdale Lancaster area, where she lived. However, she repeatedly faced a discouraging response, as most practitioners only accepted patients aged eight and above or were unable to provide the specific assistance she needed for her son.
Undeterred, she visited a local doctor at an urgent care facility, Dr. Ed Tammara. Dr. Tammara performed a quick eye red reflex test but did not detect anything unusual. However, when she showed the doctor the video of the Glow she captured, he immediately recognized the sign and privately confirmed her suspicions. He referred her to Children’s Hospital Los Angeles (CHLA) and to another local ophthalmologist.
Kourtney was determined to secure a referral to CHLA and, on January 21st, Brooks’ Dad reached out to a friend who worked at a local doctor of ophthalmology who typically treated adults. The doctor agreed to see Brooks if he could sit through the exam and provided dilation drops to prep for the exam. As Kourtney watched the drops take effect she could clearly see what had only been visible in a flash before. Dr. Opatowsky conducted a comprehensive examination and confirmed Kourtney’s suspected diagnosis of retinoblastoma. He commended her for her keen observations and assured her that he would help facilitate the referral to CHLA where they would be able to provide the necessary treatment to ensure her son’s well-being.
Following the diagnosis, the mother’s emotions ran high, but she found solace in the fact that her son would soon receive the care he needed. CHLA fortunately had a cancellation and an appointment for January 24th was scheduled. Kourtney, Brooks’ Dad, and Brooks made their way to CHLA, with Brooks’ grandparents caravaning behind for support.
While waiting to be seen, Kourtney encountered other parents dealing with retinoblastoma. She was especially comforted by meeting one father whose daughter was already through her retinoblastoma treatment and was returning for a check-up. This provided a sense of hope, camaraderie and solidarity.
With the official diagnosis in hand, the mother’s proactive efforts paid off. Brooks was the last patient of the day at CHLA and was examined by Dr. Jesse Berry. After examination, Dr. Berry shared that the tumor in Brooks’ eye was indeed retinoblastoma and was Grade D, with seeding, and would require immediate attention. Brooks was instantly admitted to CHLA. Dr. Berry and her team worked to move mountains with insurance and hospital paperwork to facilitate the process.
The decision to pursue systemic chemotherapy was made to safeguard as much of the affected eye’s vision as possible, given that Brooks had previously enjoyed perfect vision. The treatment aimed to address the seeding and eliminate the Grade D tumor, with the ultimate hope of retaining some level of vision in his affected eye. Kourtney was relieved to have this option, though she had prepared herself to do whatever it was going to take to get her son’s health back.
Brooks started chemotherapy treatment promptly. Though the first round was challenging, the family found ways to manage the side effects and to creatively get Brooks to take the necessary medications. Ultimately he would undergo a series of six systemic chemotherapy sessions. Brooks proved resilient, bouncing back within a few days after each session.
Through her unwavering determination and persistence, Kourtney is an ideal example of just what early intervention can mean for a child. After successfully capturing her son’s retinoblastoma on film and securing the medical attention Brooks urgently needed, her efforts saved not only his sight but also potentially his life. Her story highlights the importance of parental vigilance and advocacy in detecting and addressing health concerns. This journey serves as a reminder that trusting in parental instincts can lead to crucial early interventions, ultimately shaping the outcomes of critical health situations.
Believing that everything happens for a reason, Kourtney and her family hope that if her story reaches one mother in the future the way that the news story in the past reached her it will all have been worth it. We, at Know The Glow, can’t wait to watch Brooks continue to thrive. He is a shining example of just what awareness, advocacy, and early intervention can mean for a child with retinoblastoma.