02/07/2024
This is our WHY💜🩵
We are honored to share precious Audrey Eckert’s Palliative Care journey, in the words of her amazing mother, Raleigh:
“Audrey was born with a rare genetic disorder called Jacobsen’s Syndrome that caused her to have a congenital heart defect, hypoplastic left heart. She underwent three open heart surgeries and a heart catheterization in her short 19 days of life. This all occurred four years ago during the early months of COVID19 pandemic, so many of the wonderful services offered to families were temporarily restricted to limit the spread.
Our palliative care team consisted of physicians, licensed social workers, chaplains, and nurse practitioners. Their diverse backgrounds combined together to address our family’s medical, spiritual, and emotional needs. Due to the pandemic, our families were unable to visit the hospital and had to support us from a distance. It was the palliative care team, along with Audrey’s medical team, who filled this supportive role. They checked in on us everyday, brought us coffee. They helped connect us with specialists if we had any concerns or more questions.
I will never forget our first meeting with the team, they looked at Audrey as a human being rather than focusing on her diagnosis. When your child has a terminal illness it can sometimes be difficult to focus on anything but their lab results, vitals, and prognosis. But the first thing they said to us was, ‘Tell us about Audrey’. They asked, ‘What is she like?’ ‘What do you like to do as a family?’. We got to step away from all the scary medical components of her life for a moment and talk about our amazing baby girl. It was such a gift!
The palliative care team at C.S. Mott served as the ultimate advocate for Audrey. Their backgrounds allowed them to offer impartial advice and act as sounding boards during difficult decisions. They made sure the medical decisions we were making for her were not clouded by our own emotions, but were in her best interest. We discussed the differences between prolonging her life and delaying death. These are never conversations you expect to have about your child, but this team's empathetic and loving nature created a safe space in which to have them.
I think people often confuse palliative care with hospice. Palliative care is about easing suffering throughout the entire illness, whereas hospice focuses on end of life care. They sometimes overlap, as they did in our case, but not always. As Audrey was on ECMO for most of her life, restricting us from holding her, the palliative care team helped us connect with Child Life Services to find other ways to interact with her. We filled a memory box with bows and beads of courage and signs from her room. We made clay molds of her hand and foot prints. They also helped address some of our spiritual needs. It was important to us that Audrey was baptized, so they arranged for the chaplain to baptize her bedside. We were able to record it and cherish it to this day. And most importantly, when it was time to take Audrey off ECMO they helped us find ways to make it as peaceful as possible. They helped us make a list of what would be most important that day. They coordinated the entire medical team to move her to a special transition room where our family was given much needed privacy and quiet. This was an amazing feat, as Audrey's machines took up almost an entire hospital bay! They fought for an exemption regarding COVID19 visitor restrictions so that Audrey's grandparents could meet her before she died. Lastly, they granted us our most important need, allowing us to hold Audrey in our arms again. They were strong advocates for our family's needs from her birth to her death and we will be forever grateful.”
www.run-walk-roll.org
