Local family seeks community help for son’s medical journey
Roland Raabe, 2 1/2, is as active as every child his age. He loves puzzles, cartoons, jaunts outside with his stroller, visits from family and his swing. Especially his swing. Whether its outdoors at the park or in the living room at home, Roland likes to center his day on swinging.
However, despite his playful and energetic demeanor, Roland is in need of a lung transplant due to a rare respiratory disorder. Specifically, Roland suffers from a Type ABA C3 surfactant deficiency which reduces his lungs’ ability to inflate. While he waits for a suitable transplant match, he and his family will have to move to St. Louis, Mo., to live near the closest hospital capable of performing the operation.
Setting up 500 miles from home to live in waiting, along with all the inevitable unforeseen costs, has Roland’s family daunted. A benefit for Roland has been set up at fundroland.weebly.com to help the Raabe family. Donations can also be made in person at any Old National Bank in Portage County, just ask for donations to be placed in the “Benefit for Roland” fund.
“When Roland was two months old, we took him in for a regular doctor’s visit, and he hadn’t gained much weight and was breathing kind of fast. Within a couple of minutes of seeing the doctor we were in the ambulance on the way to the hospital, and that’s where he stayed for the next six months,” said Cathy, Roland’s mother and Youth Services worker at the Portage County Public Library.
“He has a very rare lung condition. It’s a surfactant deficiency. So, your lungs make surfactant and it breaks the water tension so that the lungs can inflate more easily. He makes it, but he doesn’t get it to the right part of the cell to work properly,” she said.
“He needs supplemental oxygen, he needs his ventilator and this big machine here,” she said pointing to wall-mounted machine with tubes and cords running along the ceiling to a cart which houses Roland’s breathing apparatus, “takes oxygen out of the air and goes through this green tube into his ventilator. He does breathe on his own, but this gives him additional lung volume. It breathes more air than he would normally breathe and it’s more consistent. Also, it’s humidified so it’s not like he’s in a desert.
“The thing he has going into his neck is called a trach, it’s just a safer way for him to get air, humidity and oxygen. He’s had that for five months,” Cathy said. “He can talk, he can make noises, but he mostly communicates with signs, and he’s usually pretty clear about what he likes,” she said, smiling at Roland affectionately while he occupied himself on his swing.
“He’s very mobile, and that makes him a little different from other kids who are on ventilators. There’s nothing else wrong with him, so he climbs on the couch, he goes on his swing, he’s very active. But one of the tricky things is there’s not a lot of resources out there for kids who are on ventilators and are also mobile,” she said.
“We had to figure this out, this whole system. Getting the cords up off the floor – they were on the floor for several months, he’d roll over them and it was hard to get him around – and this cart. We had to design it and have it made. There’s just not a lot of resources out there for kids like Roland,” Cathy said.
Initially, Roland did well on the set-up his parents crafted for him, but as time went on his condition required more.
“But over the past six months, he’s been requiring more and more oxygen and we had to change the settings on his ventilator to be more supportive. So, he needs more help now than he did before,” Cathy said. “It’s just not safe for him to be using that much oxygen. If he got sick, there’s nowhere to go, they wouldn’t be able to provide oxygen to keep his brain operating correctly. So, really, the only option for him at this point is a lung transplant.”
Now Roland is on the wait list for a lung transplant, but he needs to live close to a hospital capable of such a procedure, of which there are only a few. The closest is in St. Louis.
“We’ve established a good relationship with them over the past two years,” Cathy said. “Our doctor in Madison and the doctors in St. Louis say this is the time (for the transplant).”
It’s an optimal time because Roland is sick enough to need the transplant but is also healthy enough to optimize the transplant’s chance of success.
“The way it works is you move down to St. Louis and have to live within an hour of the hospital, preferably much closer. So, you have to be there, then when a lung becomes available – which is a horrible thing to think about because another child has to die – (the transplant can take place). It depends where you are on the waiting list, but also depends on the size of the lungs and compatibility. Typically, the wait for Roland’s age is three to six months,” Cathy said.
“(Cathy and Roland) have to be very close to the hospital because a lung only survives so long inside of the human body. So, surgery has to happen very quickly,” said Brock Raabe, Roland’s father and a fifth-grade teacher for the Rosholt School District.
After the surgery, Roland will need to remain near the hospital during his recovery. “We’re looking at living in St. Louis for six months to a year,” Cathy said.
Brock will remain in Portage County to continue working and travel to St. Louis to visit Roland and Cathy as much as he can, but Cathy won’t be able to work while she and Roland live in St. Louis because their insurance doesn’t cover in-home nursing care outside of Wisconsin.
“Right now living here, we have nursing about (four days a week and a few evenings) so Cathy can work and I can work. But, moving out of state, we lose the Wisconsin Medicare nursing coverage. So, that puts Cathy as the 24/7 caregiver,” Brock said.
The hospital offers suggestions for places to live in St. Louis, but the family is largely on their own.
“That’s the major expense. We’re setting up a whole second life over there,” Cathy said.
Roland, an energetic fellow on all accounts limited only by the machines tethered to him, has a chance of not needing any of the equipment after the surgery.
“The hope is with new lungs he won’t need this support system anymore,” Cathy said. “There’s no guarantees, but he’s strong … He’ll need to be there for at least three months because if anything goes wrong, that’s where he’ll need to go.
“But then it’s back here, because this is where our life is … we love our life here. We want to come back to it,” Cathy said.
To help the Roland Family, visit fundroland.weebly.com or send donations to the “Benefit for Roland” fund at any Old National Bank in Portage County.
For more information, contact Cathy via email at [email protected].