“Gwyneth was born June 26, 1999, with a heart murmur caused by a bicuspid aortic valve with stenosis. Although her condition was minor, it required regular monitoring by a cardiologist. Gwyneth was a happy, kindhearted, and vibrant young lady active in her school and community. That was until June 8, 2012, when she collapsed while running around the track at school.
Gwyneth’s father, Joel, was with her earlier in the day and was on campus for our younger daughter’s field day when a student came running to tell him Gwyneth had passed out. He found Gwyneth lying in a ditch and unresponsive, so he began CPR. Shortly after his arrival, an AED and bystander arrived by Gwyneth’s side, and together they administered CPR. They regained a pulse following two shocks from the AED.
Once the paramedics arrived, they transported Gwyneth to a local hospital. There she was evaluated, and we were informed she had to be life-flighted to a larger, specialized facility. Watching our daughter fly away was the first of many times in the days to come when we felt helpless as parents.
Upon our arrival at Virginia Commonwealth University (VCU), we found that the doctors and nurses in the PICU had already placed Gwyneth in a room and had begun the process of stabilizing her. Her condition required a series of machines, round the clock care, and a team of doctors including cardiologists, pulmonologists, and neurologists. The attending doctor told us that we wouldn’t know anything for certain for days or weeks and if she survived it would be a long recovery period.
As her parents, we set about gathering everything we needed to help with Gwyneth’s care. We collected her primary doctor’s files, consulted with her cardiologist, called friends and family, and we made sure to be present each time the doctors made rounds, or the nurses had an update. What we had not contemplated was how we could stay with our daughter throughout this process despite living over an hour from the hospital.
Once we were confident that Gwyneth was in the best hands, we turned our attention to our younger daughter and what our lives would look like over the coming days and weeks. It was at this point that a representative from Child Life presented us with the opportunity to use a Ronald McDonald family room. A room where we would be able to stay just down the hall from Gwyneth. This room was a lifeline for Joel and myself. It was a respite in which we could sleep, cry, shower and otherwise have a moment to ourselves when needed. Without this hospitality from the Ronald McDonald House, we would have been relegated to sleeping in a waiting room chair at best, or worse, left with the daily heart-wrenching decision to leave our daughter to stay at a nearby hotel.
We used the family room for nearly two weeks before being transferred to palliative care. Gwyneth remained at VCU for seven weeks. We were with her every minute. Gwyneth passed away a month after her 13th birthday. While we were not able to bring our daughter home, we cherish those final weeks with her and our ability to remain by her side.
Before Gwyneth collapsed, we never realized that caring for the family of a patient is equally important. This care is not a medical necessity but directly impacts the patient and requires a level of foresight and compassion that is frequently overlooked. We cannot say thank you enough for the generosity of the Ronald McDonald House and all the people who make such an organization possible.”
Gwyneth’s Gift Foundation came to the House and made Lunches!