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.

Related posts:

Meet Dr. Amy Harrison

CHOC Children’s wants its patients and families to get to know its specialists. Today, meet Dr. Amy Harrison, a pediatric pulmonologist. Dr. Harrison attended Indiana University School of Medicine, and completed both her pediatrics residency and fellowship in pediatric pulmonology at the University of Minnesota Children’s Hospital. She currently serves as co-director of CHOC’s Cystic Fibrosis Center, and has been on staff at CHOC for five years.

Dr. Amy Harrison
Dr. Amy Harrison

Q: What are your special clinical interests?

A:  Cystic fibrosis (CF), muscle weakness (muscular dystrophy and spinal muscular atrophy), asthma and general pulmonary health, chronic disease.

Q: Are you working on any current research?

A: Our CF program was awarded the CF Fundamentals Learning and Leadership Collaborative in June 2015, which has allowed us to improve our CF care processes and clinical outcomes for people with cystic fibrosis. We are currently studying ways to improve our patients’ knowledge of, and adherence to, prescribed pulmonary therapies.

Q: Are there any new programs or developments within your specialty?

A:  Our CF program was awarded a mental health grant through the Cystic Fibrosis Foundation to develop and implement a depression and anxiety screening program for patients with CF and their caregivers. Funds will enable the team to expand its social worker’s availability and have a designated psychologist to help patients and caregivers. They will provide screenings, evidence-based guidelines and follow-up care for depression and anxiety, as well as develop a community referral network of mental health providers. CHOC’s CF model, if successful, could be replicated in other specialty clinics.

In addition, we are excited to offer many cutting-edge therapies for CF patients including Orkambi and Kalydeco, medications that help the defective protein in CF function more normally, thus treating the underlying cause of CF.

Q: What are your most common diagnoses?

A: I see patients with a range of conditions, including asthma, chronic cough, recurrent pneumonia, cystic fibrosis, muscular dystrophy and spinal muscular atrophy.

Q: What would you most like community/referring providers to know about you/your division at CHOC?

A: The pulmonary division at CHOC offers comprehensive care for all patients with lung disease and sleep disorders from extensive lung function testing to sleep studies and diagnostic procedures such as bronchoscopy. We also have comprehensive services for patients with sleep apnea, sleep breathing disorders including apnea monitors and BIPAP data analysis for clinical management. In addition, we also offer services in Huntington Beach, Mission Viejo, Corona and Pomona Valley.

Q: What inspires you most about the care being delivered here at CHOC?  

A: I enjoy caring for children with chronic conditions and helping them to find ways of living normal fulfilling lives. I take great pride in my patient’s accomplishments and find their stories inspiring. I most enjoy creating a true partnership with my patients and their families to find ways to improve their care.

 Q: Why did you decide to become a pediatric pulmonologist?

A: I was always interested in science from a very young age and pursued a medical education due to my own fascination with learning more about how our bodies work. During my training, I developed asthma myself and found my strong relationships with my own medical professionals enormously helpful in empowering me to deal with a chronic disease.

Q: If you weren’t a physician, what would you be and why?  

A: I would probably set up my own Etsy shop and sell things I create! I often make homemade gifts for friends and family members for birthdays and holidays. I also love to travel and exposing my children to new cultures.

Q: What are your hobbies/interests outside of work?

A: I love spending time with my family and my three children, ages 2, 6 and 10. In addition, I enjoy reading, visiting museums and traveling.

Q: What have you learned from your patients?

A: I am continuously amazed by how strong and resilient my patients can be. I learn so much from them, and I have now had three patients tell me they were inspired to pursue a career in medicine because of our relationship and their disease.

Related posts:

Depression and Anxiety in Cystic Fibrosis Patients and Parents

A recent study of over 6,000 cystic fibrosis patients, ages 12 years through adulthood, and over 4,000 parents, found that depression and anxiety were two to three times more elevated in patients with cystic fibrosis (CF) and in parents of children with CF compared to the general population.[1] Although depression and anxiety are common in CF, the stigma associated with mental health issues often make people less likely to talk about them.  When left untreated, depression and anxiety can affect a patient’s ability to effectively manage his treatment plan.  CF patients with untreated depression, anxiety or both tend to have worse lung function and lower body mass index, in addition to experiencing more hospitalizations.

To address this issue, the Cystic Fibrosis Foundation (CF Foundation) announced newly developed guidelines for screening and treating depression and anxiety.  CHOC Children’s  —  one of only a few affiliated care centers of the CF Foundation in Southern California and the only CF treatment center in Orange County — is one of the first care centers to adopt the recommended guidelines.

“The psychology component of our cystic fibrosis program really makes CHOC stand out,” said Dr. Amy Harrison, pulmonologist and CF specialist at CHOC. “Our multidisciplinary approach allows our care team to manage all aspects of CF from diagnosis to physical and mental health.”

Dr. Amy Harrison

The program is a recent recipient of the CF Foundation’s grant, Implementation of the Depression and Anxiety Guidelines: Award for a Mental Health Coordinator. The grant provides CHOC the opportunity to have a psychologist at every CF clinic to help patients and families, and extends the CF social worker’s availability. They will provide annual screenings, evidence-based interventions and follow-up care for depression and anxiety, as well as develop a community referral network of mental health providers.

Guideline Recommendations

The guidelines propose that screening and treating depression and anxiety should become a routine part of CF care. The voluntary screening consists of completing a couple of short questionnaires.

Recommendations include:

  • All patients 12 years and older should receive annual screening for depression and anxiety.
  • Parents and caregivers of patients 17 years and younger should be offered annual screening for depression and anxiety.
  • A stepped process for prevention, screening, assessment and intervention. This can include talk therapy, medication or a combination of the two.

Staying Well

Patients and caregivers who recognize the beginning signs of depression or anxiety should speak to their CF care team.  In partnership with the patient and/or family, CHOC’s team will recommend the appropriate interventions.

“CHOC wants to help patients and parents break their goals into manageable pieces and focus their energy where they would get the most ‘bang for their buck.’  Patients and caregivers are experts on their own lives, so this is truly a partnership to help families continue the strategies that work for them and make changes to those that don’t,” explains Adrianne Alpern, Ph.D., a postdoctoral fellow in CHOC’s pediatric psychology department and a member of the CF team.

The CF Foundation offers the following general guidelines to help mitigate the impact of depression and anxiety:

  • Talk with someone, preferably in person.
  • Spend time with people who lift your spirits.
  • Avoid alcohol and drugs.
  • Continue with your CF treatment plan.
  • Practice good sleep habits.
  • Spent 30 minutes outside each day.
  • Make time for things you enjoy.
  • Be physically active.
  • Practice relaxation techniques.
  • Avoid caffeine and cigarettes.

Referral to the CHOC Cystic Fibrosis Center

When a child is diagnosed or is suspected to have CF, a referral to an accredited CF care center can ensure that the child gets diagnosed properly, lives a long and healthy life, and receives treatment based on the most advanced research available. With access to a full range of CHOC pediatric subspecialists, the CHOC Cystic Fibrosis Center offers a number of life-enhancing technologies and treatments.

CHOC’s multidisciplinary CF clinic includes a board-certified pulmonologist and gastroenterologist, respiratory and physical therapist, nutritionist, nurse specialists, social worker and a psychologist. An endocrinologist and other specialists are available to attend the appointment, if needed. Genetic testing and counseling can also be provided.

For appointments, please call the Patient Access Center at 888-770-2462 (888-770-CHOC).

[1] Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, Tiboshc MM, Brucefors AB, Yüksel H, Catastini P, Blackwell L, Barker D. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax. 2014;69:1090-1097. doi:10.1136/thoraxjnl-2014-205983

Related posts:

  • Meet Dr. Alyssa Saiz
    Meet Dr. Alyssa Saiz, a postdoctoral fellow in pediatric psychology and neuropsychology.
  • Meet Dr. Elisa Corrales
    CHOC Children’s wants its patients and families to get to know its specialists. Today, meet Dr. Elisa Corrales, a pediatric psychologist.
  • Mindfulness Tips for Teens
    Practicing mindfulness, or relaxation techniques can help teens build coping skills to address issues, such as anxiety disorders.