Former CIR Leader Opens New Home for Children with Complex Medical Needs

Dr. Arun Chopra wants to create a “respite house” where children with complex medical conditions can receive care from their parents and medical staff outside of the intimidating environment of a hospital.

As 8 1/2-year-old Connor Scott Millard neared the end of his lifelong battle with mitochondrial disease, he kept asking his parents to bring him home from the hospital, back to “Connor’s house.” Connor’s parents fought to allow Connor to spend time at home and questioned the medical establishment that said it couldn’t be done due to the complicated equipment and level of expertise needed to care for their son.

Their struggle showed their physician, Dr.Arun Chopra, who had been a delegate and member of the CIR Executive Committee during his residency, just how limited the options are for children with complex needs. He decided to work jointly with the Millards to found a respite house which will be named, fittingly, “Connor’s House.”  It will be one of just a handful of respite houses in the United States.

Dr. Chopra first got into palliative care as part of his ICU experiences during residency at DC Children’s Hospital. His years as a CIR member and officer also taught him how to advocate for solutions that are “outside the box.”

“The combination of what Connor’s life was and what Connor’s parents had done for him—without any help — was sort of remarkable,” Dr. Chopra said. “We were fortunate to be able to get him home,where he was able to die at home with his parents.”

However, most families don’t have the financial capability or the connections “to question the medical establishment and win,” Dr. Chopra said. “A respite house is something that can take the amazing job Connor’s parents did for him, and try to make that experience more attainable for other people.”

Respite houses are widely used in England, but are just beginning to be recognized in the United States as a valuable resource. Dr. Chopra described the vision for Connor’s House as a safe place that’s not a hospital and “that has a family feel to it.” It has a dining room, not a cafeteria, and bedrooms instead of hospital rooms, but still has the capacity to accommodate all of the life-supporting medical devices. “There’s space for the family to sleep in the same suite or room with their child, in a comfortable bed, not a hospital chair. There are nurses around to help with giving medication or monitoring the machines.But the nurses also don’t have to, which is different than a hospital,” Dr.Chopra explained. “When you’re in a hospital, the hospital takes over.”

It’s a model that Dr. Chopra and his colleagues hope will shed light on ways to accommodate patient sat home—something that may require substantial resources at first, but in the end can cost far less than keeping patients in an institution. “It’s really only these families who have these children with a million needs, that after years of working within the health care system, they realize you can do things a little differently,” Dr. Chopra said.

Connor’s House is currently in the fundraising stage and is also serving as a support network for families with complex medical needs. For more information, visit www.connorshouse.org.