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April 03, 2013

From Parenting OC

Published: April, 2013

Written by Danilae Smith

According to a survey held by the Health Resources and Services Administration, part of the U.S. Department of Health and Human Services, 10.2 million U.S. children have special healthcare needs — that is 14 percent of U.S. family households. With Orange County being a premier medical hub, especially in pediatrics, residents have access to high quality care, specific to the needs of children, regardless of the type of health challenges their child may have. Miller Children’s Hospital in Long Beach, Children’s Hospital at Mission in Mission Viejo and Children’s Hospital of Orange County (CHOC) in Orange are all top-notch medical facilities each with their own accolades and areas of expertise. Among those, CHOC is making the greatest strides in medical advancement. Consistently rated among the top 10 pediatric centers in the nation — out of approximately 250 in the nation, as reported by the American Hospital Association — over the past few years, CHOC has continued its crusade to better itself and its patient care by creating a new, seven-tower structure complete with state-of-the-art technology, child-friendly ambiance and a brand new pediatric emergency department — a first in Orange County. While anyone with a sick child will benefit from these improvements, families with special needs children have the most to gain.

“I think it’s an incredible time for our community here in Orange County and Southern California. There are two million children that live in this service area, and we currently see over 200,000 children a year. It will be the first time since we’ve opened our doors that all of the services will be provided under one roof,” said Kim Cripe, President and CEO of CHOC. Just one of the many benefits the new tower at CHOC offers its patients, it’s this idea of having a centralized place for parents and children to go, where doctors all work closely together, in close quarters, that makes a difference to children and their families.

The Dunn family has come to rely on the medical treatment of CHOC. Sarah Dunn gave birth to her daughter, Keturah, at a hospital in the Inland Empire, and upon her birth, Keturah was unable to breathe, was diagnosed with vocal cord paralysis and stayed in the neonatal intensive care unit (NICU) for two and one half months. After that time, whenever Keturah fell asleep, her oxygen levels would drop and she would stop breathing. However, the hospital where Keturah was staying told Sarah and her husband that she was just hooked up to the machine wrong. Relying on instinct, Sarah used her own judgment and got a second opinion.

“We took her across the country to see the top airway specialist, and they told us that in her first week study, she had 144 central apneas — where she stopped breathing for longer than 20 seconds,” said Dunn. Keturah underwent multiple surgeries and tests, including a tracheostomy, to treat her, but nothing worked. So, Sarah brought Keturah home. “It was exhausting because we didn’t find everything out right away. It felt like we were constantly getting hit with another thing, one right after the other,” said Dunn. She added, “On the other hand, I sometimes wonder if we could have handled everything all at one time or if it would have been too overwhelming to know all at once because we were constantly adding new care to her routine of medications, treatments and different therapies.”

Dissatisfied with the level of medical treatment for her child, Sarah sought out new care for Keturah, ultimately finding Children’s Hospital of Orange County (CHOC). “She doesn’t have just one thing wrong with her, she has multiple things, so the doctors have to work together and prioritize what’s important now versus what is something that can wait. We weren’t getting that before we came to CHOC, explained Dunn. She went on to say, “Doctor’s look at her as a whole person instead of looking at her individual specialties.”At CHOC Keturah was diagnosed as having central hyperventilation syndrome, when the brain doesn’t tell the body to breathe when it goes to sleep. “The exemplary patient-care is not just treating her, it’s treating us as a family and working together with us. She’s not a text book, she’s not like any other child that comes here. They work with us and how we work as a family to make sure we all have the best quality of life.”

Keturah and Sarah visit CHOC once a week for various appointments — which means she has to miss a lot of school. However, if it were not for the consideration that her doctors and nurses have taken, she would have missed much more. “The doctors at CHOC all know that she missed school and that we’re there every Friday, so they try their best to accommodate us when we’re there. They try to help us keep from making multiple trips and not take her out of school more than she needs, Dunn explained. “It’s really shown when we went for parent-teacher conferences, they were able to show us that she missed less school because we all worked together — me, the doctors and the teachers — to accommodate her schedule.

“The new tower means that CHOC isn’t done growing and isn’t done striving for excellence,” said Dunn. She added,“They’re up-to-par with cutting edge technology and want to make sure they offer us the best — it makes us feel loved.”

The Howard family of Yorba Linda is also benefitting from special healthcare for their child from CHOC. Marissa Howard is the mother of eight-year-old Ashton who was diagnosed with spina bifida at another local children’s hospital while Howard was still pregnant. “When we found out, we were surprised, scared and not sure what to expect,” Howard remembered. “I would go on Google and read the worst case scenarios, and it would really freak me out. I was scared that we were going to find more things wrong with him or that it was going to get worse,” she said.

As predicted by doctors, Ashton was born with spina bifida. He also has hydrocephaleus, or water in the brain, as well as a minor heart condition and a seizure disorder, and he doesn’t walk or talk. Because of all his challenges, Howard brought Ashton to CHOC to help make things easier on her. “This little guy has so many challenges that it’s much easier to have all his doctors in one area,” explained Howard. “We have over 10 different specialists and they all work together on his case, sending each other reports and working collaboratively.”

As a regular patient, Ashton visits the hospital once every six weeks for treatment, so Howard is appreciative of all the little details that make the experience easier for both of them. “CHOC is just so kid-friendly, even the toys and things on the wall are made with kids in mind,” she explained. “They even give you a pager so you don’t have to sit and wait for your name to be called to see your doctor. He’s a lot to keep entertained so little things like that make a huge difference for us both.”

It’s those kind of details that truly illustrate the organization’s dedication to ensuring the child is not just treated, but cared for too. “The thing I’m most excited about is the way we were able to design a state-of-the-art facility that is so technologically advanced but we were also able to couple the fact that we are solely dedicated to children and families into one building,” explained Cripe. “When you walk through it, it’s serene, it’s colorful, it’s inspirational and I think the benefit that the kids and families will receive when getting care in a facility like this are just enormous.”

While state-of-the-art technology brings families to this OC pediatric gem, it’s the dedication to constantly improving patient care — in every sense of the word — that makes it one of the best in the nation.


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