Why One Mom Is Thankful for CHOC This Year

By Karen Stapleton, CHOC parent and mom of Noah

Happy Thanksgiving! My name is Karen Stapleton, and my son Noah is a patient at CHOC Children’s. As I prepare to celebrate the holidays with my family, I’m grateful we can be together since we have so much to celebrate. I’m also grateful for Noah’s many doctors and nurses at CHOC because without them, my son wouldn’t be alive.

Noah’s birth story

When I was 29 weeks pregnant with Noah, we learned that he had Down syndrome. Another prenatal ultrasound showed an abnormality in his heart, and we were referred to Dr. Pierangelo Renella, a pediatric cardiologist at CHOC, who diagnosed Noah with tetralogy of fallot, a serious heart defect that causes poor oxygenated blood flow from the heart to the rest of the body. I was scared, but having been a CHOC patient myself as a child, I knew my son would be in good hands.

Karen and Noah in the NICU, shortly after Noah was born
Karen and Noah in the NICU, shortly after Noah was born

On July 27 of last year our lives changed forever— Noah was born! I chose to deliver at St. Joseph Hospital in Orange so that my son could be as close to CHOC as possible. When he was born, there were so many doctors and nurses around. I saw Noah quickly enough to give him a kiss before he was whisked away to the Neonatal Intensive Care Unit (NICU) at CHOC.

Shortly after birth, Noah’s care team also diagnosed him with Apert syndrome, a genetic disorder that causes certain bones to fuse early. For Noah, that was his skull, fingers and toes.

 

A series of surgeries begins at 3 days old

Noah’s first surgery happened just three days after he was born. Due to the complexity of Noah’s conditions, the surgery was a team effort from multiple CHOC specialties. Noah’s gastroenterologist Dr. Jeffrey Ho; his team of cardiologists Dr. Renella, Dr. Michael Recto, Dr. Anthony McCanta, and Dr. Gira Morchi; his pulmonologist Dr. Amy Harrison; his otolaryngologist Dr. Felizardo Camilon; and the entire NICU team came together to prepare him and get him through that surgery.

It was a success, and 31 days after he was born, Noah finally came home! Weekly trips back to CHOC’s clinics included visits to gastroenterology, pulmonary, cardiology and craniofacial specialists. It was another team effort to prepare Noah for a second open heart surgery that he would eventually need.

gates-and-noah
Noah and his cardiothoracic surgeon, Dr. Richard Gates

But a few weeks later, Noah had respiratory complications, which lead to an emergency open heart surgery at just 2 ½ months old. Thanks to Noah’s cardiothoracic surgeon, Dr. Richard Gates, and Noah’s fighting spirit, he was able to come home shortly after surgery.

Celebrating Christmas at CHOC

Just days before Christmas last year, Noah had to be admitted to CHOC for respiratory failure. It was scary to see my baby sedated for 19 days. Dr. Juliette Hunt, a critical care specialist, recommended that Noah undergo a tracheostomy, where a small opening is made in his windpipe and a tube is inserted to help him breathe. Making a decision like that is hard and scary for a mom, but I had complete trust in Noah’s team, and if they knew it would help Noah breathe easier, then I knew it was the right thing to do.

edited-christmas-stocking
Noah celebrated his first Christmas at CHOC

After that, Noah started to thrive. He gained weight and became strong enough for his next open heart surgery with Dr. Gates. After a mere six days in the Cardiovascular Intensive Care Unit following this surgery, Noah got to come home again!

Even when Noah is doing well, sometimes it can be scary to care for him when he’s at home. During one of our hospital stays, I confided this fear in one of Noah’s favorite nurses, Karissa. She gave me specific tips on what to do during his tummy time and baths, and gave me the courage to care for my son. She encouraged me, and reminded me that CHOC wouldn’t advise me to do anything that wasn’t safe.

Noah and Karissa, a registered nurse at CHOC

Noah’s first birthday

All of this is a lot for a little baby to go through before his first birthday, but Noah has always surprised us and pulled through. Celebrating his first birthday meant more than celebrating his first year of life; it meant celebrating every fight Noah had won over the last year, and it meant appreciating a milestone that at times we thought we might never reach. We decided a super hero theme was perfect for his party because we think of Noah as our little super hero.

Noah celebrating his first birthday

After his birthday, Noah continued to flourish and grow! He started rolling over and actively playing, and he has not stopped smiling.

This progress allowed us to prepare for his next major surgery, a frontal orbital advancement, to reshape his skull and forehead that has fused too early due to Apert syndrome.

Before surgery could begin, the doctors needed to cut Noah’s hair to make a safe incision in his skull. We marked another one of Noah’s milestones at CHOC— his first haircut!

Noah received his very first haircut at CHOC from his neurosurgeon Dr. Michael Muhonen, prior to a skull surgery.
Noah’s very first haircut happened at CHOC. He received it from his neurosurgeon Dr. Michael Muhonen, prior to skull surgery.

With the expertise of his neurosurgeon Dr. Michael Muhonen and his plastic surgeon Dr. Raj Vyas, and a very short stay in the Pediatric Intensive Care Unit, Noah came home again! After yet another successful surgery at CHOC, his brain can now continue to grow.

Noah has more hurdles and additional surgeries ahead of him, but even with how much he’s fought, he continues to smile. He’s not cranky and he doesn’t cry. He’s enjoying every single day he gets to be here – and that’s the life he has taught me to live too.

If Noah’s care team ever needs a reminder of why they do what you do, I tell them: My son would not be here today if it were not for each and every one of them here at CHOC. And for that, my family will be forever grateful.

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Volunteer Role Awakens Professional Calling

Every year, more than 800 CHOC Children’s volunteers provide nearly 100,000 hours of service. They pursue volunteerism for different reasons, but they all donate their time to help CHOC provide the very best pediatric services in Orange County. Some are retired community members looking to give back, and others, like Brianna, come in as high school students seeking new experiences.

Brianna started volunteering at CHOC when she was just 16 years old. She needed to complete volunteer hours as part of a school project and having grown up in Orange, she thought CHOC would be a worthy place to donate her time. Back then, she didn’t know what her eventual career path would look like. Due to her customer service experience as well as her bubbly and warm personality, she was placed as a customer service ambassador. That placement would eventually inspire her to become a registered nurse at CHOC.

Members of CHOC's customer service team celebrating Brianna's graduation from nursing school.
Members of CHOC’s customer service team celebrating Brianna’s graduation from nursing school.

“We could tell she loved working with kids and families,” says Sandra Schultz, customer service manager at CHOC. “She was a comforting presence in what can be a scary and stressful time. Her good energy was contagious, and she loved our mission statement- to nurture, advance and protect the health and well-being of children.”

She was tasked with enhancing the CHOC patient experience by visiting patients and families to welcome them upon admittance and ensure that their non-medical needs were being met. If a need were identified, she helped facilitate a solution by providing time-sensitive and compassionate communications with the appropriate CHOC department.

Sometimes the opportunity to help a family was as small as getting a parent a glass of water.

“As a nurse now, I know that it’s the little things that matter,” Brianna says.

Her ambassador role allowed to her see a variety of environments in the hospital, which sparked her interest in nursing, particularly the pediatric intensive care unit.

“It was the most complex I’d ever seen medicine before,” she says. “But I felt like those kids were the ones I was supposed to be with, the kids who were having some of the hardest days of their entire lives.”

As a volunteer, Brianna was an avid learner and wanted to learn about every department inside the hospital. That passion for learning helped propel her through challenging coursework in nursing school, and eased her transition from volunteer to nurse when she came back to CHOC.

During stressful moments in a crucial unit of the hospital, Brianna relies on lessons she learned during her customer service volunteer days at CHOC.

“It’s important to be able to take a step back mentally when things get stressful. I’ve learned to remember where we are, what we’re doing and why we’re doing it,” she says.

Even after she transitioned into a nursing role, Brianna remains a part of the customer service family at CHOC. Her former colleagues-turned lifelong friends surprised her in the PICU on her birthday with a card and gift, and they celebrated her nursing school graduation right alongside her family. Every year the group reunites to participate in CHOC Walk in the Park.

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Twelve-year-old becomes first CHOC patient to receive life-saving device

Erin Greaves and her son, Sean.
Sean and his mom, Erin.

Erin Greaves woke to the sound of her son’s gasp and the dogs barking. The pediatric nurse raced to 12-year-old Sean’s room and immediately began performing CPR. When paramedics arrived, Sean was experiencing ventricular fibrillation, a serious heart rhythm problem that is the most common cause of sudden cardiac death. He was defibrillated twice before being taken to a nearby hospital, and subsequently transported to CHOC Children’s.

As a patient in CHOC’s pediatric intensive care unit, Sean underwent a series of tests, including a cardiac MRI, cardiac catheterization, exercise tests and genetic testing. Results revealed no structural damage to his heart and no underlying condition. Sean’s ventricular fibrillation was ruled idiopathic, which means no known cause.

Sean’s cardiologist, Dr. Anthony McCanta, has specialized expertise in the treatment of irregular heart rhythms and presented a unique option to Sean and Erin. Physicians primarily use implantable cardioverter defibrillators (ICDs) to treat the most serious heart rhythm problems. The device constantly tracks the patient’s heart rhythm and delivers an electric shock to the heart when it beats abnormally fast. Traditional defibrillators require electrical conductor wires, or leads, to be inserted into the heart through a vein in the upper chest.

Sean and his mom chose a newer treatment option called the Subcutaneous Implantable Cardioverter Defibrillator (S-ICD). The 12-year-old became the first CHOC patient to receive the device.

“The S-ICD is not as invasive as other ICDs since the sensing and defibrillating electrode is implanted directly under the skin of the chest wall and it is connected to a generator in the axilla, or lower armpit area. No component of the device is inside the veins, heart, or even the inner chest itself. Consequently, there are fewer future complications of leads in the vein and heart, and a much faster recovery time — tangible benefits for young active children,” explains Dr. McCanta.

Just one week after Sean’s frightening ordeal, he was back at home in excellent condition.

“Even though I am a pediatric nurse, I am a mom first. I have tremendous gratitude for Dr. McCanta and the CHOC team who took such excellent care of Sean. He is back at home, playing with the dogs and his friends, and looking forward to starting middle school in the fall,” says Erin.

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CHOC Experts Discuss Drowning Prevention

Drowning is the second leading cause of unintentional, accidental death in children, two CHOC Children’s experts tell “American Health Journal.”

Drowning is completely preventable, and CHOC offers a robust water safety program, say Dr. Paul Lubinsky, a CHOC critical care specialist, and Michelle Lubahn, a community education coordinator at CHOC.

Learn more about drowning and its prevention in “American Health Journal,” a television program that airs on PBS and other national network affiliates that reach more than 40 million households.

Each 30-minute episode features six segments with a diverse range of medical specialists discussing a full spectrum of health topics. For more information, visit www.discoverhealth.tv.

Paul Lubinksy, M.D., served his internship at Groote Schuur Hospital and the Red Cross Children’s Hospital in Capetown, South Africa. He served as chief resident at UC Irvine Medical Center in Orange followed by a pediatric critical care fellowship at CHOC Children’s.

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Kids and PICS

A SERIOUS ILLNESS OR INJURY CAN BE A SCARY EXPERIENCE FOR A CHILD AND HIS OR HER FAMILY
Post Intensive Care Syndrome (PICS) is a relatively new constellation of symptoms given syndrome definition. PICS encompasses physical, cognitive and mental health issues affecting survivors of critical illness. Doctors are now focusing more on identifying children and families at risk, and instituting preventative and treatment programs. “Surviving a  critical illness is not the end of the saga,” says Dr. Lubinsky. “Today we have many more survivors from the Pediatric Intensive Care Unit (PICU) than in the past. (97% at CHOC Children’s) We are focusing on rehabilitation and re-integrating them into life. The quality of life of survivors of critical illness must be addressed from the first day, and is being woven into the treatment plan. Simply surviving is an insufficient goal.”

FAMILY INVOLVEMENT
“Family centered care promotes involvement in the patient’s care and has changed the environment of care in the PICU,” says Dr. Lubinsky. “Through the increased involvement of families in the child’s care and by minimizing the side effects of sedative medications, patients and families are involved as members of the team.” Parents give input and are given as much control as possible. Doctors discuss the illness and plan with the children. “There are no secrets with the kids,” says Dr. Lubinsky. “We help them to understand.” Care is improved when everyone is involved and understands. “We also have an increased understanding of the side effects of some of the care, e.g. minimizing the side effects of sedative medications, and exercising as much as possible,” says Dr. Lubinsky. “The care is improved when they understand all aspects.”

PREVENTING PICS IN FAMILIES
“It is vitally important for family members to take care of themselves,” says Dr. Lubinsky. His advice for families: “Be involved in the care. We like families to participate in rounds and learn what’s going on. They should have maximum understanding and control. They see that there is a team of people caring for their child and we are open and honest. Families should participate in care. Read to the patient. Keep them oriented. Change a diaper. Those normal activities that you otherwise would be doing are a normal part of coping and feeling like you are a part of the team. I encourage parents to stay with their child as much as possible. It’s a lot better for parents to be there while the child is receiving care. Imagination is worse than reality.”

WHAT IS PTSD?
Families with a very sick child or child in the PICU can be stressed, exhausted, anxious, depressed and feel a sense of grief, all of which can affect their quality of life. Symptoms can include (among others):

  • Persistent re-experiencing of the trauma, or flashbacks
  • Irritability
  • Difficulty sleeping

FAST FACTS

  • Number of days required to recover from one day in an ICU bed: 3
  • Percent of family members of a child in the PICU who will develop PTSD: 10.5 – 21 %
  • Percent of PICU children who will develop PTSD after a critical illness: 5 – 28 %
Dr. Lubinsky
Dr. Paul Lubinsky
CHOC Pediatric Critical
Care Specialist

PHYSICIAN FOCUS: DR. PAUL LUBINSKY

Dr. Lubinsky is the associate director of the Pediatric Intensive Care Unit at CHOC Children’s. He specializes in caring for critically ill children with respiratory and cardiac failure as well as neurological emergencies. He is president of the PSF and Medical Director of CHOC Children’s Specialists and is an associate clinical professor at UC Irvine.

Dr. Lubinsky’s philosophy of care: “When a child is admitted to the hospital, it can be just as scary for the parents as it is for the child. The team treats the whole family. We treat the entire family with the greatest compassion and understanding.”

EDUCATION:
University of Cape Town, South Africa
Pediatric Residency and Chief Resident UCI
Critical Care Fellowship CHOC Children’s

BOARD CERTIFICATIONS:
Pediatrics Pediatric Critical Care

More about Dr. Lubinsky

This article was featured in the Orange County Register on January 14, 2014 and was written by Amy Bentley.

CHOC Mission: World Class Children’s Care

This article was featured in the Orange County Register on August 5, 2013 and was written by Shaleek Wilson. View the full feature article and more at choc.org/health.

CHOC_08-06-2013_mission_half

A Special Place

“CHOC Children’s at Mission Hospital is a unique little hospital,” says Dr. Goodman. Small in size, but big on comprehensive services for newborns to teenagers, it’s the only dedicated pediatric hospital in South Orange County. Housed on the fifth floor of Mission Hospital, CHOC’s world-class team treats everything from asthma attacks to injuries resulting from serious accidents.

Family First

CHOC Children’s at Mission Hospital takes care of the whole family. Through its family-centered care approach to treatment and recovery, CHOC tends to the emotional and practical needs of caregivers so they can focus on their child feeling better. “We want to make them as comfortable as they can be for as long as they want to stay,” explains Dr. Goodman. Several amenities are offered to the families including the Ronald McDonald House Family room which includes computers, areas for resting and kitchenette.

Units of Care

In addition to its medical/surgical “unit,” the hospital has Neonatal and Pediatric Intensive Care Units. CHOC’s neonatal team treats Orange County’s littlest residents. The Pediatric ICU offers high-level care for children who suffer from critical illness or injuries such as an auto accident or near drowning.

How does CHOC Children’s at Mission help kids feel better?

“Hospitals can be a scary place for children,” says Dr. Goodman. From the colors on the walls to its commitment to respecting cultural backgrounds, CHOC Children’s at Mission Hospital’s child life specialists help children cope by providing:

  • Books and video games
  • Dolls to explain medical treatments
  • Activities to help distract kids from painful procedures

Fast Facts

  • Population served by hospital: 1 Million
  • Total beds at CCMH: 54
  • Patients treated yearly: 2,400

 

Dr. Gary Goodman  Medical Director, Pediatric Intensive Care Unit
Dr. Gary Goodman
Medical Director, Pediatric Intensive Care Unit

PHYSICIAN FOCUS: DR. GARY GOODMAN

Dr. Goodman specializes in pediatric critical care with expertise in the treatment of shock, RSV and traumatic brain injury. He served his fellowship at CHOC and completed both his residency and internship at UC Davis Medical Center.

Dr. Goodman’s philosophy of care: “I take great interest in making sure my patients and their families understand what we’re going to do [to make them better] and why.”

EDUCATION:
University of California, Irvine Medical School

BOARD CERTIFICATIONS:
Pediatrics, Pediatric Critical Care Medicine

More about Dr. Goodman

 

Learn more about CHOC Children’s at Mission Hospital.

CHOC Patient Experiences Miracle Thanks to Four Amazing Docs

The Bill Holmes Tower at CHOC Children’s is now open, and as we celebrate our new hospital and its state-of-the-art programs and services, including the Julia and George Argyros Emergency Department at CHOC Children’s – Orange County’s first fully dedicated pediatric ED, we’d also like to take an opportunity to celebrate and recognize just a few of the many doctors making miracles happen every day within the walls at CHOC.  Here, we hear from Heather and Curtis Short about the CHOC doctors who saved their son’s life.

Cameron and his Dad, Curtis.
Cameron and his Dad, Curtis.

Cameron was born with cranial stenosis, or improper fusion of growth plates in his skull. When he was 8 months old, we scheduled corrective surgery at CHOC Children’s.

After his surgery, he was stable in the pediatric intensive care unit (PICU), so we went home to sleep.

But a ringing phone jerked us awake at 6 a.m. Cameron had suffered two heart attacks and a stroke. We raced back to the hospital to find the chaplain waiting to console us. Cameron had coded.

We went into the PICU to say goodbye. In a fog, we watched Dr. Adam Schwarz administer chest compressions. He brought Cameron back to life.

We experienced a miracle in the form of Dr. Adam Schwarz, Dr. Anjan Batra and a superb cardiac emergency team.

Twenty-one days later we left the hospital – the three of us, together. Now we have the friendliest, most enthusiastic 5-year-old in Orange County, if not the world.

But CHOC docs still play a very important role in our lives. Every six months, Cameron visits Dr. Michael Rebolledo for an echocardiogram. Since Cameron’s initial hospital stay, CHOC docs have seen him through a heart catheterization and an aortic valve repair.

In fact, just after Cameron’s fifth birthday, we learned that he would need open-heart surgery for a faulty mitral valve. We were terrified. After all, we came too close to losing Cameron the first time.

Again, we were saved by a CHOC doctor – this time, Dr. Richard Gates. He assured us that cardiac surgery would be less risky than Cameron’s original cranial surgery. As he calmed our fears, Dr. Gates handed Cameron his stethoscope, making everyone in the exam room happier.

We left Dr. Gates saying to ourselves, “We can do this. Cameron needs the surgery. We need to go into it with confidence.”

Today we have confidence. And we have Cameron — both thanks to CHOC doctors.

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