3 main takeaways from my TED Talk for TEDxStLouis | By Nick Holekamp, MD

I tell the story of Lisa, an adorable little girl who was born with life-threatening heart defects. She had three open heart surgeries in the first 14 months of her life and she needed tubes to help her breathe and eat.

Lisa had a DNR order, which stands for Do Not Resuscitate. Her family was prepared for the worst.

When Lisa was discharged from the acute care hospital, she came to us. We focused on developing her motor skills and allowed her the space to walk, play, and even dance.

After her time at Ranken Jordan, Lisa’s DNR order was reversed. I believe it was the opportunities we provided Lisa and our unique Care Beyond the Bedside model that gave her a future no one expected.

Children with medical complex needs require a lot of technology, such as feeding tubes and oxygen tanks, to be safe, so I understand it’s difficult for these kids to leave their hospital bed.

But it’s not impossible. At Ranken Jordan, we’ve found ways to take the crucial equipment they need when they are in bed with them wherever they go. We even have a merry-go-round outside our building that even kids on life-support can use. Their equipment just goes along for the ride.

Caring for very sick children is difficult, I get that. But we as a medical community need to look for more innovative ways to ensure these kids make it successfully to adulthood and have the most fulfilling life possible.

I believe the way to do that is by caring for the whole child, and not just a child’s medical needs. 80 percent of infants who are dependent on technology will have significant developmental delays.

We need to hold ourselves accountable and make hospitals more developmentally stimulating for these kids. We need to dedicate more research and resources to help very sick children achieve their greatest potential.