Every once in a while a patient story comes to light that has the lasting power to remind you how precious life is, not only for those living it but also the loved ones who have surrounded that life. Gracie Hazleton is one such extraordinary story.
Gracie was born in 1997 with significant medical challenges including Arthrogryposis, a rare condition that impacts many parts of the body. Her condition set into motion a life challenged with Gracie being non-ambulatory, non-verbal, in addition to numerous significant orthopedic issues and low muscle tone. She spent the next fifteen years going through countless surgeries, ER visits, hospital admissions, and outpatient appointments to try to manage and improve in every way possible. Despite these challenges, Gracie was extremely tuned in and engaged to her environment. While she couldn’t speak in words she was able to communicate by using pictures and facial expressions to show her bright personality. She was always known for being happy, fun, and, according to her mom, she was even flirtatious with the boys.
Gracie’s parents, Elizabeth and Rob, went on to have two more healthy children in subsequent years and adapted to challenges one at a time for Gracie’s medical condition. As you can imagine, the significant health issues at times limited more traditional family activities, like travel and vacations, but it didn’t dampen the close-nit family bond that had been created over many years. The whole family went on a few manageable trips like the beach and Williamsburg. In an effort to expose the two younger boys to areas outside of the Richmond Region, the family infrequently utilized respite care which provides for 24 hour care for a short period of time. Respite care is an incredible gift for parents who have to normally be on watch 24 hours a day for the child with significant disabilities. In 2012, when Gracie was 15 years old, her parents took the boys to Wyoming and placed Gracie in respite care. Unfortunately, while they were away Gracie choked and was rushed to Chippenham Hospital. This was her first visit to Chippenham based on her family’s home being farther away in Henrico County. Due to limited airline options her parents were unable to get home for a day and half. Luckily extended family soon arrived and immediately got immersed in Gracie’s care, in addition to her parents remotely as they desperately tried to come back to Richmond.
The clinical team at Chippenham’s Pediatric Intensive Care Unit, under the leadership of two extraordinary Pediatric Intensivists, Dr. Alam and Dr. Batista, worked tirelessly to do all that they could for Gracie. It soon became evident that she wouldn’t make it. The family had always believed in organ donation and with the hospital’s help got connected to Lifenet Health and started the process. Gracie’s parents quickly realized how great both the hospital and the Lifenet teams were through their difficult time. Elizabeth commented, “The Chippenham team managed the chaos beautifully. The nurses were extraordinary.” The decision was made to remove her breathing tube on August 15th. One of the care team suggested that if the two brothers (8 and 12 years old at the time) wished they could lie on each side of her on the bed as she was extubated. They were used to lying next to her as it was something they would do frequently at home. The just jumped up onto the bed right away and were by her side for her last breaths. Today that difficult experience is one of the things they cherish most about her final days. The surgical team was able to successfully harvest her liver and one kidney along with other tissues to save other lives. Gracie’s mother shared with me, “We had never been to Chippenham Hospital before that experience. Today we have positive feelings about what happened here. The process was a step in the right direction through a difficult time to help parents heal. The staff made a point to prepare Gracie for her family’s visit so she would look her best. It was an ending but clearly also a new beginning.”
Gracie’s parents decided this summer after three years to put together some of the pictures that the Lifenet photographer had assembled through the last period of her life. She made a video to share with others not just to remember the wonderful child they knew and loved but also to share the importance of organ donation. I encourage you to take a look:
You will notice that Amazing Grace is played in the background. Listening to Elizabeth tell me about the amazing life of Gracie Hazleton makes it an exceptional choice. Gracie’s 12 year old brother played the song on the piano during her funeral to remind everyone how fortunate and lucky they were to have her in their lives.
We often don’t want to think of organ donation but it is one of the most impactful decisions we can ever make. I encourage you to formally make it a part of your plan. You can learn more by going to www.lifenethealth.org.