New inpatient pediatric rehab helps Columbia girl recover from life-threatening ailments

The list of major health problems that hit Kaiden Hamilton in the months before her seventh birthday is harrowing. “No one could have ever predicted – it was so sideways. It wasn't even on my list of worst nightmares. It went incredibly wrong, incredibly fast,” her mom, Malinda Ward-Hamilton, said.

But the solutions they found, including inpatient rehabilitation at the MUSC Shawn Jenkins Children’s Hospital, have allowed Kaiden to go home to Columbia and gradually return to just being a kid again. “I feel like we were just put in the right path of the right people the whole time – and the best of the best,”Ward-Hamilton said.

 

Kaiden’s story has its origins in something that happened when she was a newborn. “She got necrotizing enterocolitis while in the neonatal intensive care unit,” her mom said. 

Necrotizing enterocolitis, or NEC, kills as many as 50% of the babies it affects. The life-threatening condition involves the death of intestinal tissue due to harmful bacteria. Kaiden was at risk for NEC because she born with a condition called gastroschisis, which means there was a hole in her belly that allowed her intestines to extend outside of her body. 

She survived but lost part of her intestine. “So Kaiden has had short bowel syndrome since she was 3 days old,” Ward-Hamilton said.

That meant Kaiden needed to be fed through a tube connected with a vein. It kept her nourished, but it also raised the risk of a bloodstream infection. Kaiden had three of those infections in her life. It was the third one that turned her family’s world upside down. 

Late last year, that infection landed her in a local hospital that eventually transferred her to the MUSC Shawn Jenkins Children’s Hospital in Charleston for specialized care. One of her doctors at MUSC, pediatric cardiothoracic surgeon Mac Felmly, M.D., described the chain of crisis-level medical events that came before her arrival.

“She had originally come to the hospital with this line infection, which made her feel ill with upper respiratory symptoms, fever, but she progressed to severe respiratory failure. She had to be placed on a breathing machine; she suffered a cardiac arrest, was rescued from that, and then was put on ECMO.”  ECMO stands for extracorporeal membrane oxygenation, a heart and lung support machine.

 

“And around the time of that event, she also suffered from acute kidney failure, requiring essentially continuous dialysis. At that point, she was sent down to us at MUSC.”

Doctors at the MUSC Shawn Jenkins Children’s Hospital also diagnosed Kaiden with endocarditis, a serious bacterial infection of the heart lining or valves.“We don't always operate immediately for tricuspid valve endocarditis. Sometimes, you can just manage it with antibiotics,” Felmly said.

But Felmly, part of the No. 2 pediatric cardiology team in the country, said Kaiden would need more than that. “Unfortunately, the antibiotics didn’t make her better, so we took her to the operating room to fix her valve. She was very high-risk for heart surgery given her severe infection, respiratory failure and kidney failure.”

Endocarditis had taken a serious toll, almost destroying Kaiden’s heart valve. So Felmly and his team replaced it. Kaiden also needed a pacemaker because the infection had affected the part of her heart that makes it beat. To everyone’s relief, she came through it.

Ward-Hamilton was grateful to Felmly and the heart team. “He's one of the best pediatric cardiac surgeons in the U.S., and somehow, we were blessed enough to land in his hands. You can tell, just being in that environment and being on the third floor and seeing the way they operate, it is a level of care – there's no way to describe it. It's so amazing.”

 

But Kaiden’s troubles weren’t over. She developed new tremors in her body and problems with movement. A scan showed a possible injury to an area of her brain that could have led to these issues. 

The therapists working with Kaiden knew she’d need extensive rehabilitation once her condition was stable. So once it was safe to move her, she was transferred to the brand-new Pediatric Rehabilitation Unit in the MUSC Shawn Jenkins Children’s Hospital, led by Scott Benjamin, M.D., section chief of Pediatric Rehabilitation Medicine. It’s one of only two such units in the state.

“When I first met her, she was still in the ICU. She still had a lot of complicated medical management for her infection, heart and neurological issues.  She had just had heart surgery.  And then as things were progressing, I continued to follow her during those early stages of recovery.  She was a really, really sick kid, with serious infection, heart surgery and a long, really complicated course,”  Benjamin said. 

 

But complicated is his team’s specialty.  It not only has its own medical experts such as Benjamin but also access to other specialists, including physical therapists, occupational therapists, speech therapists and members of the Child Life team, which is trained in understanding how kids react to illness and being in the hospital. 

As Kaiden slowly healed both physically and emotionally under the rehab unit’s care, she bonded with her care team. “She made a family there,” her mom said. 

“All of the nurses and all of the staff love her. They all love their KK. They watched her, just her personality. We used to talk about it when she was on ECMO. I was like, ‘Wait till you guys see her real personality,’” Ward-Hamilton said with a laugh. “And now they see it and they just say, she's a diva.”

A diva who, a few months after her arrival in Charleston, was well enough to leave the hospital on her own two feet – with a little assistance. Benjamin said Kaiden still has a long recovery ahead, one he’ll be keeping an eye on. “She's made a ton of progress.”

To get to that point, she’d needed the care of many of the hospital’s specialty teams,  including cardiology, cardiothoracic surgery, neurology, gastrointestinal care, intensive care, infectious disease, nephrology, pulmonary and rehab medicine, in addition to the physicial therapy, occupational therapy and speech therapy in the pediatric inpatient rehab unit. Benjamin said her case shows how important it is to have all of these services available and coordinated at the MUSC Shawn Jenkins Children’s Hospital.

Kaiden’s mother agreed. “This team has done everything in their power to get her here. Every hospital should function the way this one does. There is literally a team on call for everything you can think of. And in my daughter's case, she needed that. She needed nephrology, hematology, pretty much all the ologies. All of it led us here. And we get to take our little girl home.”