My older sister, Alicia Smart, is my best friend. I have followed her nearly my entire life – she is incredibly patient with me – yet her brain aneurysm journey is one that I have had to view from the sideline. While watching and trying to support a two-time brain aneurysm survivor is incredibly awe-inspiring, I was personally frustrated that I could not alleviate Alicia’s fears and pain throughout her two brain aneurysm recoveries. Instead, I decided to channel my energy into being a brain aneurysm awareness advocate. I hope that in sharing our family’s story we can provide support to others who are impacted by brain aneurysms, and help strengthen the brain aneurysm community. I am indebted to the Bee Foundation for the personal stories that they highlight as they provide connections with brain aneurysm survivors and caretakers. These deeply personal stories assuage fears and create community for families who experience incredible levels of trauma. I hope our story can further help create connection and provide support to those who may feel alone.
Nearly four years ago, on January 7, 2018, my sister Alicia suffered a ruptured brain aneurysm at the age of 30. As our first godsend would have it, she was at home with Louis, her husband, who was able to respond immediately following her seizure. The paramedics subsequently rushed her to the hospital as she was unresponsive. A CT scan revealed a subarachnoid hemorrhage (blood in the brain released from the ruptured aneurysm). Within 24 hours her medical team successfully performed an endovascular procedure known as “coiling” to repair the bleeding aneurysm.
Thrown into the unknown of dealing with a ruptured aneurysm and a recovery that would be challenging, varied, and long, we reached out to our network of family and friends to better understand how we could support her and specifically to see if anyone knew of someone who’d suffered from a ruptured brain aneurysm. As Alicia experienced physical and mental challenges over her long recovery, hearing from families and patients who suffered from ruptured brain aneurysms provided a better understanding of the complexity of brain aneurysms and that every situation is different, as is every recovery. These personal testimonies helped Alicia, and us, her support team, acknowledge the incredible patience that is required in the healing process, how temperamental recovery can be, and how we, as a team, could continue to help. This additional layer of emotional support helped us all as aneurysms, and the lack of information that is readily available, makes it difficult for caretakers and survivors to navigate their new situation. It was invaluable for us to see head-on some of the challenges Alicia could face, and to know that we had resources and a network to turn to. We were also incredibly fortunate to have friends help breakdown medical terminology into layman’s terms, and who also assisted in relaying how complicated traumatic brain injury recoveries can be.
As we began to understand and research aneurysms, we were able to connect some information that could have led to a diagnosis. Several months prior to the rupture, Alicia had complained of severe headaches and a stiff neck. While she had gotten an MRI, the MRI did not provide the vascular detail necessary to identify an aneurysm. Subsequent to her rupture and diagnosis, we leaned on materials from the Brain Aneurysm Foundation as our first resource in understanding the different types of aneurysms and to better understand this silent disease. We were incredibly fortunate in the quick diagnosis, partially due to the seizure, which led to the ER team understanding that the problem was neurological.
The Brain Aneurysm Foundation and the Bee Foundation have tremendous educational material. In January 2021this prompted me to advocate for September to be designated as Brian Aneurysm Awareness Month in Virginia. As mentioned, having resources not just to identify aneurysms prior to their rupture, but also to guide families, caretakers, and survivors subsequent to an aneurysm diagnosis can greatly impact recovery and provide critical support to those who need it, especially in the face of what we know are inevitable feelings of helplessness. I advocated for this in January 2021 and in February 2021we found that the Bill passed in Virginia marking September as Brain Aneurysm Awareness Month!
Since January 7, 2018 Alicia has continued to amaze us with her tremendous strength and resilience. During her time in the ICU she progressed from a medically induced coma to proving her ability to speak and swallow and use of her arms and legs. As part of her incredible journey, in September 2020 Alicia gave birth to a little girl, Delphine Davis Smart. We are also grateful that in December 2020, following a routine MRA, she was diagnosed with a second aneurysm and traveled to NYC to have a craniotomy to clip this second aneurysm. While her subsequent recovery again took some time, we are thankful that routine screenings were a part of her diagnosis, and that her team was able to quickly put a plan in place. She had a remarkable neurosurgeon team, and incredibly it was the same team that helped her in 2018 – the renowned Dr. Howard Riina and the Tisch Hospital at NYU Langone.
This second aneurysm diagnosis is also what originally led us to the Bee Foundation and to connect with Elizabeth Ratta, a Bee Foundation advocate. Prior to Alicia’s second aneurysm surgery she spent a lot of time on Google researching her procedure, understanding the recovery and potential complications, and connecting with survivors. While I tried to offer my support in helping prep their home and manage logistics while they would be in NYC for the surgery, it was Elizabeth’s words that provided the much needed sage advice that only a survivor could offer. In reading Elizabeth’s Bee Foundation story, not only was Alicia able to put to words her own fears of being a new mother and leaving her 5-month old daughter for the first time, but she was also able to absorb the guidance that “you are going to be completely fine and you are the one that has to believe it.” I could sense Alicia take a deep breath and release tension and anxiety that she had been withholding since her second aneurysm diagnosis. Just knowing how much this one connection meant to Alicia, the level of support and relief that it provided her, encourages me to share our story so that it may provide others with a semblance of hope and peace.
Over the past three years and since her second diagnosis, my sister has continued to amaze family and friends and demonstrate strength, perseverance, compassion, and kindness. I am also thankful that through outreach we have been able to connect with other families and survivors, serving as a layer of support as others had for us. The unexpected nature of ruptured brain aneurysms can cause upheavals to personal and professional lives and any information we can provide to help prepare, prevent, and support survivors and caretakers can greatly impact numerous lives.
In watching my sister recover from her ruptured brain aneurysm and her craniotomy, I have seen how brain aneurysm survivors face greater adversity than many of us will know in our lifetimes. A survivor’s display of strength is nothing short of heroic, especially as from one day to the next their life can be completely altered. All of us who have seen just one survivor’s journey over the past three years are utterly in awe of the courage, patience, resilience and perseverance that it takes.
I appreciate the Bee Foundation’s advocacy efforts and hope that we can help others and continue to pay it forward for survivors, caretakers, families, and friends.