While working as a neonatologist for almost 30 years in the Newborn Intensive Care Unit (NICU) at St. Louis Children’s Hospital, Joan Rosenbaum, MD, has seen firsthand the tremendous struggles parents experience when their child is sick.
“Having a sick child is about the most difficult thing for anyone to go through,” Dr. Rosenbaum says. “It’s a life-changing event. That’s why I feel strongly that we need to give parents extra support, especially since we care for the most complex kids here at St. Louis Children’s Hospital.”
Dr. Rosenbaum’s drive to do more for families led her to pursue a fellowship in clinical pastoral care at Massachusetts General Hospital in 2009. When she completed her training, she brought her experience and skills back to St. Louis Children’s Hospital to start the Pediatric Advanced Care Team (PACT).
With funding from St. Louis Children’s Hospital Foundation and Dr. Rosenbaum’s passion and leadership, PACT was up and running by 2011.
PACT includes physicians, nurse practitioners and a social worker who work in collaboration with spiritual care, child life, psychology and other pediatric specialists to help both the child and family deal with the symptoms, pain and emotional stress of serious illness.
Dr. Rosenbaum says PACT provides an umbrella of care for kids who float between the hospital and home. “The children we work with have complicated, complex conditions that can be potentially lifelimiting. Our philosophy of care focuses on the wholeness of the children and family. Our goal is to help the child live as well as possible for as long as possible.”
PACT follows about 40 patients each day at St. Louis Children’s Hospital. The team saw nearly 200 new patients in 2018. “Families face so many difficult choices,” Rosenbaum notes. “We help them navigate the options as well as the implications of their choices for both their child and the family as a whole.”
Kali and Patrick Bowman of Springfield, Missouri know the challenges of choices all too well. Their daughter, Ellie, now 4, was born with a severe heart defect.
Over the past four years, Ellie has had three open-heart surgeries at St. Louis Children’s Hospital and has been in the hospital numerous times. In 2017, she was also diagnosed with pulmonary hypertension, which led to a heart failure diagnosis in April 2018.
She was rushed from Springfield to St. Louis Children’s Hospital, but it was one setback too many for Kali. “I was scared to go home with her and needed to talk to someone,” Kali says. That’s when PACT stepped in and helped Kali and Patrick work through their fears.
Most families quickly understand that PACT is about hope,” Dr. Rosenbaum says. “We bring a different set of eyes and advocate for parents and their child.
Because we’re a small team, families see a consistent face throughout their hospital stays, and we develop a strong relationship.”
After the diagnosis of heart failure, the family went home to Springfield with 17 medications and oxygen. “We were hopeful Ellie might have one to two years to live by managing her heart failure,” Kali says. “Unfortunately, she quickly got worse and was airlifted back to St. Louis Children’s in July.”
Ellie needed a heart-lung transplant to survive, but the road wouldn’t be easy. Kali and Patrick struggled with the transplant decision. “At first, we didn’t want to put Ellie through it,” Kali says. “I was overwhelmed, and it was a very emotional time for us.”
She says PACT played a big role in helping them through their decision. “They led us to think about things in focused and realistic ways. We built such a trust with them, and PACT helped us make some very heavy decisions.”
After just four weeks on the transplant waiting list, Ellie’s condition quickly deteriorated. “We were thinking we’d have to let her go,” Kali recalls. “Everyone was preparing us for the worst.”
Then came the “miracle call” on September 22, 2018. “On Friday night, we were thinking about her funeral, and by Saturday night, we were prepping her for the transplant,” Kali says. “At that point, PACT was celebrating with us.”
After transplant surgery, Kali says, Ellie woke up smiling. “I knew right away she felt better. Since then, she has had more energy than she ever has in her life, her color is better and she is finally starting to gain weight and outgrow her clothes. She enjoys doing things like swinging that she never enjoyed before. It’s pretty amazing.”
Dr. Rosenbaum is one of the team members from PACT who celebrated Ellie’s transplant. “One of the best things is to celebrate a child who has made it,” she says. “It’s a great gift to be able to do the work we do.”
