“Forrest is septic and his organs are shutting down.”
Brittany and David Spence never expected to hear those words. Only 11 hours after welcoming their first child, Robert “Forrest” Spence, at Methodist Le Bonheur Germantown, doctors delivered the unimaginable news.
Forrest Spence needed immediate critical care and was transported to Le Bonheur Children’s Hospital via Pediflite. Once at Le Bonheur, Forrest was admitted to the Pediatric Intensive Care Unit (PICU) where he lived for 55 days.
At 31 days old, Forrest opened his eyes for the first time and his mother, Brittany, was finally able to hold her baby. The medical team in the PICU provided not only the critical care Forrest needed but the support the Spence family sought.
“The way the PICU staff loved us and cared for us, they became our family. They would rejoice with us on good days and mourn with us on hard days,” Brittany said. “Our eyes were opened to this new world in the hospital: You see a toddler who is the victim of non-accidental trauma, you see a 14-year-old ATV accident, you see a 4-year-old drowning victim, and it forever changed us.”
Forrest passed away in Brittany’s arms while David held her on Nov. 4, 2007, in the only home he ever knew — Le Bonheur’s PICU.
In the days before Forrest died, David shared an idea with Brittany to start a non-profit organization to help address the non-medical needs of families like theirs with a critically-ill child in the hospital.
Heartbroken and devastated, but determined to help others, Brittany and David met with a local foundation to discuss establishing the Forrest Spence Fund. David designed a logo: a little tree leaning into a big tree, illustrating the strong support Forrest Spence Fund would provide to families.
They sat down with Le Bonheur administrators and shared their desire and passion to help patients and their caregivers.
“When we were in the PICU, I asked the nurse why some patients didn’t have parents at their bedside,” Brittany said. “The nurse shared that often times a parent is only able to come to the hospital after work for a few hours because they have used up all their paid vacation time and are at risk of losing their job, or they have no money for gas to get to the hospital. Knowing this was the case for so many families truly shocked us and inspired us to help.”
Brittany began by fulfilling wish lists of items for Child Life, providing toys and games for patients. She also supplied care baskets for patient families and appreciation bags for Le Bonheur staff — projects that the Forrest Spence Fund still does today.
Forrest’s life inspired his parents’ paths forward. David was a second-year orthopedic resident when Forrest passed away and because of his son, he chose pediatrics to help sick and injured kids. When Brittany spends time with families in the hospital, she shares her experience of having a critically-ill child.
For 15 years, Forrest Spence Fund’s mission has been to assist with non-medical needs of critically- and chronically-ill patients and families, including assistance beyond the four walls of the hospital. When families need help with essentials like rent, utility bills, or basic supplies like cribs for when they are discharged home, the Le Bonheur social work team refers the family to Forrest Spence Fund.
It was the most lonely 55 days of my life. I knew no one who had had a sick child or a child who had died. I can’t change if someone’s child is lying there sick or dying but I can be there with them so they feel less alone. I hope through our work that families feel supported and know that they can depend on the Forrest Spence Fund to help.
Forrest Spence Fund also provides institutional support through 22 hospital programs, including the distribution of family meals, a comfort cart, and unit appreciation gifts to celebrate teams throughout the hospital.
Eligible families can also apply to the Fund for financial grants to assist with specific needs like housing or transportation.
Finally, Forrest Spence Fund partners with counselors to provide families with mental health resources at no cost to the family.
Le Bonheur Psychologist Carlos Torres, PhD, has witnessed firsthand the impact that Forrest Spence Fund has on patients and their families.
Torres works with the families of Le Bonheur patients in the hospital. Yet his time with families is limited and more intensive therapy is often required. The stress of a sick child can be overwhelming and in the case of many families that Torres works with, it is not the first traumatic event that they have faced.
“It can be difficult for families to connect with outpatient mental health resources,” Torres said. “Many families have a hard time navigating the system and finding in-network providers available in the community who are accepting patients in a timely manner.”
Luckily, Forrest Spence Fund helps bridge the gap to outpatient mental health services.
When Torres identifies a family that would benefit from therapy beyond their time at Le Bonheur, Forrest Spence Fund finds licensed providers for the families and arranges the appointment. They also pay for up to 12 free sessions for families, thus eliminating some of the barriers to mental health services.
“Forrest Spence Fund is an invaluable resource at Le Bonheur,” Torres said. “They understand why mental health services are often critical and ensure that patient families are connected to outpatient resources. They build trust with patient families by meeting immediate needs like catered meals and show them Forrest Spence Fund genuinely cares about Le Bonheur and its patients.”
The Austin family has felt the positive impact that Forrest Spence Fund has on families at Le Bonheur. At 17-weeks pregnant, Jennifer and John Austin learned that their daughter had Trisomy 18, or Edwards Syndrome, and that 90% of children with this diagnosis do not make it to their first birthday.
When the Austins welcomed their daughter, Nori, she required intensive care, including several surgeries, for heart defects and gastrointestinal issues. She spent the majority of her first 14 months of life at Le Bonheur.
From day one, Brittany and the Forrest Spence Fund were there supporting the Austins.
“The moment we met Brittany, we felt at ease,” Jennifer said. “We could breathe a sigh of relief when she walked in because we knew she would listen and be supportive, and could help us navigate the hospital.”
The kind of support that Forrest Spence Fund gave us is priceless. Brittany Spence has helped so many families that have no safety net and wouldn’t be able to adequately care for their sick child or their family without Forrest Spence Fund.
When Nori was approaching her first birthday, Brittany wanted to make sure the milestone was celebrated. Brittany organized a party at the hospital complete with a fitting ladybug theme for the baby affectionately called “Nori Bug”.
“While the patient in the hospital is the primary focus, sometimes the needs of the family are forgotten,” John said. “We went through our savings in the first few months of Nori’s stay at Le Bonheur due to missing time at work and spending money on meals and gas. Forrest Spence Fund stepped in to help with gas gift cards, meal vouchers and catered dinners.”
Not only did Brittany ensure John, Jennifer and Nori were well cared for, she also made certain that the other Austin children’s needs were met. At Christmas, Nori’s siblings received gifts from Forrest Spence Fund when her parents might not have been able to afford them.
“The kind of support that Forrest Spence Fund gave us is priceless,” John said. “Brittany Spence has helped so many families that have no safety net and wouldn’t be able to adequately care for their sick child or their family without Forrest Spence Fund.”
In the past 15 years, Forrest Spence Fund has helped more than 98,000 families at the four hospitals they serve, including meeting 77,819 family needs at Le Bonheur since the Fund’s inception. Brittany and David Spence celebrate the memory of their son, Forrest, by showing other families compassion and love when they need it most. Thousands of lives have been touched and changed for the better by Forrest Spence Fund.
“It was the most lonely 55 days of my life. I knew no one who had had a sick child or a child who had died,” Brittany said. “I can’t change if someone’s child is lying there sick or dying but I can be there with them so they feel less alone. I hope through our work that families feel supported and know that they can depend on the Forrest Spence Fund to help.”
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