Twelve-year-old Amelia very likely could have been looking at emergency dialysis starting in her 20s. But because her chronic kidney disease was detected while she was still in middle school, she has a fighting chance to keep her disease from progressing.
“This program probably saved this young lady from showing up in an emergency room at age 25, feeling terrible and being told that she has kidney disease and needs to start dialysis,” said Dr. Margaret Bock, a kidney specialist with Children’s Hospital Colorado, where Amelia is being treated.
Dr. Bock is talking about UCHealth Healthy Hearts, a 26-year-old program that screened about 7,000 Colorado students in 110 schools in Larimer and Weld counties during the 2017-18 school year. Healthy Hearts teams up with school districts’ health classes to provide heart health education to more than 12,000 kids annually. About 65 percent of these kids also participate in the program’s free cardiovascular school health screenings.
A screening for Amelia detected high blood pressure — generally rare in children, but even more so in a healthy and athletic preteen, Bock said. The team of Health Heart nurses followed up to make sure the reading was accurate, and also saw that Amelia had a family history of high blood pressure (hypertension). They called her mother, Kari.
“I wasn’t overly concerned because my husband has high blood pressure,” Kari said.
But, the call was enough for Kari and her husband, Doug, to schedule an appointment with their family physician.
“We are so proud of them for going to their physician and saying, ‘Let’s do something,’” said NaNet Jenkins, manager of Healthy Hearts. “We can’t force anyone to follow up. We can just help them find those resources if they need them.”
Test results showed protein in Amelia’s urine, a possible sign of kidney damage. The physician recommended they see Bock. After more tests with Bock, the family learned the seriousness of the situation. They were also relieved to finding out sooner than later.
Something’s not right
Amelia’s blood pressure reading with Healthy Hearts was 156/112. For children, the normal systolic range (top number) falls between 90 and 110.
“Her reading really stood out,” Jenkins said. “Kids with high blood pressure, or who are toeing the line, are concerning because we know they may be at risk as an adult.”
Numerous studies have shown that elevated blood pressure in childhood increases the risk for high blood pressure and other health issues in adulthood, according to the American Academy of Pediatrics (AAP). These kids also experience accelerated heart aging, which is the main reason why Healthy Hearts includes blood pressure in their screenings.
Another reason is that high blood pressure — as with chronic kidney disease — usually has no symptoms.
“Oftentimes you don’t know you have either of these issues until you get to a place that they are very bad,” Bock said.
The AAP recommends that blood pressure be taken annually in children starting at their 2-year-old well visit.
Healthy Hearts performs its screenings starting around the fourth or fifth grade, then again in seventh and 10th grade. They record these results so that a student’s health can be tracked over time. Parents can also see results when they sign up with My Health Connection. Students and their parents do not need to be part of UCHealth to use that online health record service.
Because high blood pressure can be a symptom of kidney disease, Bock had Amelia’s kidney function tested. It rated a three on a scale of one to five, where one is slightly atypical and five needs dialysis, Bock said.
“It was a good thing (Healthy Hearts) caught this,” she reiterated. “Now we can work to keep Amelia healthy. She knows what she has and can figure out what to do best to keep herself healthy.”
The kidneys and high blood pressure
The kidneys — two fist-sized organs located on either side of the spine below the rib cage — serve as the body’s filtration system. They filter the body’s blood — either adding or removing water and chemicals based on the body’s need — and excrete that waste in the form of urine.
But they do a whole lot of things besides excrete urine, according to Bock.
“They also take care of growth in children, bone health, and making new red blood cells,” she said. “Amelia is not at the stage of disease where the kidneys are not filtering the blood (the process which dialysis mimics), but when kidney disease progresses it can also affect intellectual development.”
Kidney disease can result in high blood pressure, and high blood pressure can further damages the kidneys. In Amelia’s case, high blood pressure wasn’t the cause of her disease but a result of it.
Amelia’s cause of kidney disease was actually bilateral renal hypodysplasia — which is when a person is born with small kidneys, affecting how efficiently they function.
High blood pressure can further damage kidneys, so Bock is treating Amelia’s high blood pressure.
“Our goal is to keep her kidney disease where it is because unfortunately, the kidneys are not like the liver where it can regenerate,” she said. “It is what it is. So we have to keep her as healthy as she is now.
“She is very healthy, just with high blood pressure, and that high blood pressure will continue to damage her kidneys. A big part of taking care of her is normalizing that blood pressure and avoiding anything that could be toxic for the kidneys, such as certain medications.”
Living with chronic kidney disease
Since Amelia’s disease was caught early, doctors can be proactive in her treatment, Kari said.
“Her kidney function is about 35 percent, but when it drops under 28 to 30 percent, then we’ll need to start a preemptive kidney donor search,” she said. “If she can get a transplant before she hits stage 5 and needs dialysis, then I’m told her body takes better to the transplant. But we’re hoping to wait until she’s at least out of adolescence.”
In the meantime, Amelia continues to be an active teenager. She’s dancing — something she’s been doing since she was 3 — and she still got to go on a school trip to Ireland right after her diagnosis.
“She doesn’t like to talk about it, but we don’t downplay it because she’ll have to live with it the rest of her life,” Kari said. “She has to manage her health.”
Kari said they find strength in other’s young women’s stories. Musician Selena Gomez received a kidney from her best friend in 2017. And actress Sarah Hyland of “Modern Family” opened up about her battle with kidney dysplasia as well. In 2012, she too had a kidney transplant.
Empowering kids and their families
Healthy Hearts is the brainchild of UCHealth cardiologist Dr. Gary Luckasen, who more than two decades ago saw a need for prevention education in young people.
“We learned that kids as young as 2 can have plaque in their arteries,” Luckasen said. “I thought it was imperative to educate and screen children early on to prevent heart disease and other chronic diseases.”
Initially, Healthy Hearts began with elementary students in 1992 and then added high school 10 years later. In 2014, the implementation of the middle school program completed the mission of providing education, screening and prevention at three targeted time points.
“Adolescence is a crucial time point in which kids start to break away from their parent’s ideals and form and test their own. It was important to provide our programming to middle school-aged students to arm them with knowledge,” Jenkins said. “Healthy Hearts teaches the scientific ‘why’ behind what it means to be ‘healthy’ and couples it with their own personal screening results. We love explaining the science of how one’s health habits impact their heart, vascular system and even blood pressure.
“And the beauty of the program is that we can catch abnormalities, like with Amelia.”
The unique screening techniques of Health Hearts helps.
“What’s different about our screening is that the participant goes through the whole process with the same Healthy Hearts screener which allows us to earn the students trust,” Jenkins said. “This empowers the student to ask deeper questions regarding their screening results and health habits. We can dive deeper and help the student identify barriers that are preventing them from living a healthy lifestyle while simultaneously providing positive reinforcement for current healthy choices. We love to celebrate successes as it instills confidence and reinforces their smart choices.”
When something shows up — such as a family history of high blood pressure — Healthy Hearts can then invite the family to possibly join its family program.
The six-week family program, aimed at reducing heart disease, brings families together to break unhealthy habits, set realistic goals and engage them in healthy activities to improve their likelihood of success while supporting one another.
“You can’t make changes if you don’t know how to,” Jenkins said. “Whether for the student or for a family, our goal is to educate and inspire them to live their best life.”