Supporting Parents of Children with Complex Medical Needs

Declan Donoghue was 2 years old when he died in 2010 of X-linked chronic granulomatous disease, a rare disorder that decreased his immune system’s ability to fight infection. The disease made him susceptible to pneumonia, arthritis and other problems.

Because the disease was not diagnosed until after he died, his parents, Nicole and Rich Donoghue of Kernersville, struggled throughout Declan’s life to understand the bewildering array of problems their son faced.

“One of the biggest frustrations was that there really was no communication between specialists, and the person in the middle of it was me,’’ says Nicole Donoghue, whose son was treated by as many as 10 specialists. “I felt like I was being a medical quarterback and I’m not schooled in medicine enough to even know what I was hearing or what was being communicated.’’

The efforts of Nicole and Rich Donoghue to improve communication among the many doctors who treated Declan at Wake Forest Baptist Health – Brenner Children’s have made a difference.

The Declan Donoghue Collaborative Care Program was created in 2011 to bring together all providers involved in the care of a child with an undiagnosed illness. To date, the program has received 53 referrals. It is part of a larger Pediatric Enhanced Care Program, which assists families of children with complicated medical needs while also coordinating care among multiple providers.

The Pediatric Enhanced Care Program is led by Savithri Nageswaran, MD, MPH. The program puts the power of a team of pediatric specialists behind individual children with complex medical conditions from the start. The team includes physicians, nurses, a social worker and a patient navigator, and support parents by:

  • Coordinating the child’s medical and practical needs.
  • Improving communication among all of the people providing care to the child.
  • Helping parents find the resources they need throughout their child’s medical journey.

“The children we care for are typically kids who have some type of brain injury or trauma, or were born extremely prematurely. It also is possible they may have some kind of birth defect,’’ Nageswaran says.

“What they have in common is the need for care from multiple specialists, sometimes 10 to 15 providers, and they need technology for survival,” she says. “Our team works to increase collaboration among all providers involved in the care of children with complex medical conditions.”

Better Care Management

More than 900 children, most of whom face extremely difficult health issues, have been treated in Brenner Children’s Pediatric Enhanced Care Program since 2008. By holding weekly meetings to discuss individual cases and by communicating with all of a child’s providers, the Pediatric Enhanced Care Program is able to better manage both the care of these children and the challenges faced by parents, Nageswaran says.

The Pediatric Enhanced Care Program also works with community partner agencies to provide assistance in obtaining services frequently needed for children once they are discharged.

Amber Burnett’s daughter, Rebekah, was born in December 2012 with multiple birth defects of her heart. This led to problems such as dilated kidneys and loss of matter in her brain. She had other issues as well, such as a cleft palate, which resulted in feeding issues. As a result, in her 14 months of life, she only lived at home for a few weeks. Burnett says the Pediatric Enhanced Care Program team helped her obtain critical items she needed during those periods when Rebekah could be home.

“I met all kinds of people in the Neonatal Intensive Care Unit because Rebekah had kidney issues and reflux,” Burnett says. “The team was always there if I felt overwhelmed, which I sometimes did.

“When Rebekah passed away, they were all there.’’

Cherrie Welch, MD, leads a medical team called Collaborative Care for Babies with Extended Stays that is similar to the Pediatric Enhanced Care Team but is focused on infants being cared for in the Neonatal Intensive Care Unit. Welch’s team has weekly meetings of 25 or more people, with a three-part goal to:

  • Ensure that patients are progressing along the plan devised for them while they are hospitalized and coordinating all of the subspecialties involved.
  • Ease stress of parents and ensure they have what they need before they take their baby home.
  • Consider issues that could bring the baby back to the hospital and address them in advance.

Readmission rates for these babies have been reduced by half since the program began, Welch says.

Research Could Lead to Change

Nageswaran is using data gathered from the Pediatric Enhanced Care Program and related programs in medical research that could lead to more change. A study she co-authored in 2012 in the journal Academic Pediatrics described existing collaboration among agencies serving children with complex chronic conditions, but noted major gaps that future studies need to address.

“This is an emerging field,’’ Nageswaran says. “It’s only 10 to 15 years old. We’re just trying to advance knowledge. What are some of the real issues faced by children and families? What are some strategies that we’ve heard from parents that are needed, and how can we create an interventional model that can work here and elsewhere?”

Nicole Donaghue says she is pleased with Wake Forest Baptist’s commitment to improving outcomes for undiagnosed children with complex medical issues and helping parents deal with the myriad issues that result.

“We’ve been in an ongoing dialogue with Brenner Children’s and the leadership at Wake Forest Baptist on how to get these programs promoted,’’ she says.

“We certainly feel that Declan drives us to do many great things in his honor. We are most proud when we hear about cases in which a child had their ailment either resolved or a better plan was put in place for them to heal. We feel Declan’s looking down on us and helping us to help other children."