Bethie Roland Fund for Perinatal Palliative Care
Mary Elizabeth Roland was born on August 26th, 2015. She joined the angels in heaven on October 24th, 2016. Those fourteen months provided happiness and love beyond our wildest dreams.
There are many doctors and nurses who made a difference in Bethie's life. There are places and organizations that are a huge part of her story. There is one team, though, that stands out from all others - Lurie Children's Perinatal Palliative Care.
Dr. Natalia Henner and her team supported us from twenty weeks pregnant through Bethie's first eight weeks. They did more than that, though; they prayed for and celebrated every odds-defying milestone that Bethie achieved. They loved her and supported us in every decision we made, well after we left Chicago. They did not help her die beautifully, they helped her live beautifully. We are honored to raise funds to support the work that they do to give children good, meaningful, LOVED lives. The following are excerpts from emails we wrote to Dr. Henner throughout Bethie's life:
After we took Bethie for her first visit at Colorado Children's
Doctors confirmed there were no good surgical options, but brought up the possibility of her living several more months -
"Brian and I truly value your guidance, and you have played such a special role in Bethie's life. We often reflect on the fact that her life was a choice. While it's true that we made our choice before you came into our life, your presence helped us to never doubt. You supported and cared for us, and helped us feel ready to welcome Bethie and celebrate her life, whatever it looked like. We believe more than ever that she is a miracle, and you helped bring this miracle into the world. I might have said this before, but I will say it again now (and likely in the future too) - we will never be able to thank you enough."
The day before Bethie's first surgery
"Your team has played such an important role in supporting us as a family from the very beginning, and it has become even more important to me to share the role that hospice / palliative care has played in bringing Bethie to this point as we meet new doctors and nurses. We have never been pressured into making any decision, and we have always felt supported in our choices. We have been able to give her what we believe is the best life possible."
The morning of Bethie's second surgery
"This life with our miracle has been unbelievable. There have been times of suffering that were hard to make it through. We know now that she was dying before we brought her here for her first surgery. Those two months were long and so hard, and we questioned what was best for her and if we would even make it here. She has led the way, though. I feel like we made the best decisions we could for her, and now we are trying to follow her lead. I remember thinking when she was born - she is so tired. This is what she wants, to rest at home with us. I had no idea she wasn't just resting - she was gathering strength to fight for her life. And she is the tiniest, loveliest fighter you have ever seen. I know hospice doesn't turn out this way for most (if any), and we don't know why God chose her, but we are so thankful for her chance at life. We are so thankful that he led us to choose hospice for her when there was very little if any hope. We are so thankful for doctors like you who have dedicated themselves to giving her a good life at every step. Her good life has looked so very different throughout her first year, but it has ALL been good."
Thank you for loving Bethie. Thank you for supporting a program so dear to our hearts and so important to our family.
A note from the team at Lurie Children's:
Your donation will support the Perinatal Palliative Care Program at Lurie Children’s in Bethie’s memory. The program incorporates palliative care consultations into the care of women expecting babies with identified potentially life-threating conditions and spans Prentice Women’s Hospital, Lurie Children’s, and Journey Care outpatient palliative care/hospice services. In addition to counseling families when a possible life-limiting condition has been identified early in a pregnancy, the program is also available for those whose babies have a serious, unexpected medical condition following birth.
All donations are tax-deductible and will be acknowledged by Lurie Children's Foundation.