For parents of children who need specialty care on top of their typical visits with pediatricians, CHOC’s growing Primary Care Network offers seamless integration with more than 30 specialty areas represented by CHOC’s mighty brigade of pediatric specialists.
Lea, age 4, has seen a CHOC specialist since before she was born. Lea was diagnosed in utero with hydronephrosis – a treatable condition in which urine gets trapped in the kidney and drains slower than it should into the bladder. A routine ultrasound flagged fluid in Lea’s kidney, and her mom was referred to CHOC’s urology program for a fetal consultation.
Dee Dee, Lea’s mom and a longtime CHOC employee, knew her daughter was in good hands.
“The urologist explained everything in a way that was easy to understand,” Dee Dee recalls. “I was comforted knowing that this condition was common, my daughter would be OK, and that they would continue to monitor her and manage the condition after she was born.”
Dee Dee chose to deliver at St. Joseph Hospital in Orange for its proximity to CHOC. Doctors weren’t concerned that Lea’s hydronephrosis would cause her any immediate harm, but it gave the first-time mom peace of mind knowing that CHOC was right across the street.
Specialty care with CHOC’s urology program
Lea returned to CHOC’s urology program after she was born for additional testing and monitoring.
Urologists confirmed the prenatal diagnosis and also diagnosed Lea with vesicoureteral reflux or VUR, where urine flows backward. Lea’s VUR is due to wide ureters – tubes located between the bladder and kidney, and essential to proper urine flow – and valves that are too small to efficiently direct urine flow.
Some children with VUR grow out of it without the need for medical intervention. This is less common in children with higher grade openings between the kidney and bladder, as is Lea’s case. Doctors explained to Dee Dee and her husband Pat that over time, VUR can lead to infections in the kidneys. Eventually, a high number of these possible infections can lead to kidney damage.
After receiving Lea’s diagnoses, Dee Dee and Pat switched their daughter’s pediatrician to one in CHOC’s Primary Care Network.
“We realized that if we were going to need specialty care for our daughter, we wanted a pediatrician in the CHOC network to fit into that puzzle,” Dee Dee says. “CHOC is the best partner in caring for our child.”
Lea has remained under the care of CHOC urologists, who continue to monitor her VUR. This has included two voiding cystourethrograms (VCUG). With this test, doctors insert a catheter and dye to fill Lea’s bladder, then take X-rays of fluid flowing in real time. Tests of any kind can be stressful for young kids, so child life specialists from CHOC’s Cherese Mari Laulhere Child Life Department have been present for each of these tests with Lea. Child life specialists are experts in normalizing the hospital environment for kids, but by being an extra source of comfort, they often put parents at ease, too.
“Child life has been amazing with Lea,” Dee Dee recalls. “During one VCUG, the child life specialist asked about Lea’s favorite song. At the time, it was “Wheels on the Bus” so that’s what she sang with Lea. I joined in the song, and before I knew it, every single clinician in the room was signing along to “Wheels on the Bus.” I remember thinking that even though the radiologist was so smart and so focused on performing the test, he was not above singing this song. He knew that is what my daughter needed in that moment to feel comfortable.”
Shortly after Lea’s first birthday, she underwent a procedure called a Deflux injection, where, under anesthesia, doctors injected a protein or ureter material to make the wall of Lea’s ureters thicker, hoping to close the gap and ensure proper urine flow, helping to continue avoiding UTIs.
Lea’s care team – including her parents – remain on high alert for a urinary tract infection or UTI, as a high number of these can contribute to kidney damage. Lea took preventive antibiotics until she was potty trained to help avoid UTIs.
Lea sees her urologist Dr. Heidi Stephany a couple times per year, and they’re able to seamlessly communicate with Lea’s CHOC pediatrician, Dr. Katherine Williamson.
Primary care network
As part of CHOC’s growing health system, pediatricians in CHOC’s Primary Care Network not only have full access to any medical records from their patients’ specialty care visits, they can also see notes from recent visits to other providers, meaning they have the latest information on their patients’ medical history.
This coordination was especially beneficial for Lea and her parents on a recent weekend when Lea had a suspected UTI. Although common in children, with Lea’s VUR, potential UTIs are cause for concern.
Thanks to Saturday morning hours at Lea’s pediatrician’s office, they were able to get a last-minute appointment.
“With Lea’s condition being relatively rare, I’m used to explaining it to people,” Dee Dee says. “But when we saw Dr. Ball, he already knew her medical history and was very familiar with her condition. We typically see Dr. Williamson in that office, and she is well-versed in Lea’s health, but seeing Dr. Ball was seamless. It was such a relief not to have to explain anything to a new-to-us provider.”
A urine sample is a routine and necessary part of testing for UTI. These can be hard for children and parents alike, but Dee Dee felt grateful that Dr. Ball and his staff were patient with Lea.
“The whole staff was really patient with us, even though we were the last appointment of the day. They just kept coming in and checking on us to see how we were doing,” Dee Dee says. “The office also felt very safe during COVID-19; everyone was masked, and everything was clean.”
Ultimately, Dee Dee and Lea headed home with instructions to drink more fluids to help Lea produce a urine sample, and a plan to head to CHOC’s urgent care in Orange when Lea was ready. During this time, Dee Dee called CHOC’s urology team to confirm their course of action.
“I called the urologist on call, and even though it wasn’t Dr. Stephany, who we typically see and who is most familiar with Lea, the doctor who called us back had already looked at Lea’s chart and read Dr. Ball’s notes from that morning,” Dee Dee says. “He reassured us we were doing the right thing and validated my choice to bring her to CHOC’s urgent care.”
Lea continued drinking fluids to help produce a urine sample. When Dee Dee and Lea got to CHOC’s urgent care, they saw Dr. Vivi Tran, a CHOC pediatrician. Dr. Tran likewise could see Lea’s complete medical history and Dr. Ball’s notes from that morning, as well.
“I didn’t need to explain a thing,” Dee Dee recalls. “Dr. Tran was already up to speed, and that was such a weight off my shoulders.”
CHOC pediatricians know kids, and they know that rushing a child – especially to do something like produce a urine sample – will often have the opposite effect. Dr. Tran checked in with Dee Dee and Lea periodically, and even brought Lea an apple juice to help her produce a urine sample.
“CHOC made this as stress-free as possible for Lea and me. We were there for three hours trying to get Lea to produce a urine sample, and never once did I feel rushed,” Dee Dee recalls.
Lea’s UTI test was ultimately negative, and she had a regularly scheduled appointment with her urologist the next week.
“The seamless coordination of care between Lea’s pediatrician’s office, her specialist and urgent care was unmatched. We could never find that anywhere else. I didn’t have to bring anyone up to speed on what was happening or my daughter’s medical history. They had access to her records and the latest information on her case,” Dee Dee says of her daughter’s experience. “I also know our positive experience wasn’t just because I’m a CHOC employee; everyone receives a high level of care.”
Mom’s perspective
Since joining CHOC’s marketing department in 2013, Dee Dee has had a firsthand look at CHOC’s patient- and family-centered care and has worked closely with a number of CHOC specialists. This recent experience with her daughter gave her a greater understanding of and appreciation for CHOC’s system of care.
“We write about various conditions every day and provide education on CHOC’s coordinated system of care. I already knew these things were true because of my job, but then I experienced it myself as a mom and I truly understood how beneficial these things are,” Dee Dee says. “It seems like the scariest thing in the world, to have a child who needs CHOC’s care, but it’s actually the most comforting thing.”
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