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.

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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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CHOC Children’s Patient Gives Back: Juneau’s Story

Juneau Resnick Speech

At 8 years of age, Juneau Resnick experienced a life-changing event. A close family friend, Gina, passed away after a devastating battle with brain cancer. Gina had devoted her life to working with infants in a neonatal intensive care unit (NICU). Juneau, who spent the first 40 days of her life in a NICU, developed a special bond with her. Owing to her prematurity, Juneau developed hydrocephalus necessitating numerous brain surgeries. After a series of difficult events, Juneau’s parents transferred her care to Dr. Michael Muhonen, medical director of The CHOC Children’s Neuroscience Institute.

To honor Gina and to thank Dr. Muhonen and the CHOC team who did so much to improve her health, Juneau and her teacher came up with the idea of a fundraiser to coincide with the 100th day of school. In addition to passing out flyers, Juneau spoke in front of 700 people at a school assembly. She shared her personal experience with CHOC, and made a plea for each student to bring in 100 coins. Combined with a baked goods and lemonade sale organized by Juneau, the students’ donations totaled almost $1,000.

“She is truly passionate about helping others. She has an unwavering passion that I’ve never seen before and I work with kids,” says Juneau’s mom Ai, a substitute teacher. “I’ve seen a lot, and she is a rare bird.”

Juneau remains dedicated to continuing to raise money for CHOC. Every month, she partners with her teacher to sell pencils, erasers and other supplies at school to support an initiative dubbed Kids and K9, benefitting a local animal shelter and CHOC.

“I’m doing it to make kids happy and put a smile on their faces,” said Juneau. “I want them to forget where they are and just have fun.”

The young philanthropist is grateful for her renewed health and so happy to be under the care of CHOC Children’s.

Learn how you can start your own fundraiser for CHOC.

Derek’s Story: A Landmark Procedure

Derek Young looked like any other baby when he was born in February 1994. But 3-1/2 months later, his mother Pamela noticed his head was slowly getting larger. Doctors diagnosed hydrocephalus, or fluid on the brain, and placed a shunt to drain the fluid. Fast forward 10 years when Derek needed a shunt revision. He was treated at the CHOC Children’s Neuroscience Institute and released.

CHOC Children's Neuroscience Institute

However, six months later, Derek returned to CHOC with what appeared to be a failure of the original shunt. Neurosurgeon Dr. Michael Muhonen decided to perform a pioneering procedure called a third ventriculostomy in which he made a tiny hole in the wall of the third ventricle of the brain — allowing movement of fluid out of the blocked ventricle.

As a result of this extraordinary surgery, Derek no longer required a shunt nor did he or his mother need to live in constant fear of shunt failure. An avid swimmer, this procedure allowed him to continue to pursue his passion, including completing a Catalina-to-Long-Beach swim to raise money for CHOC.

Derek is now a 6’2” 20-year-old junior at Northern Arizona University studying to be an emergency room or intensive care unit nurse, a career directly inspired from his experience with CHOC. From the compassionate, skilled nurses who made him laugh to the expert, encouraging doctors who described the procedure in terms he could understand, Derek’s experience with CHOC was life-changing.

Learn more about CHOC Children’s Neuroscience Institute.

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Meet Dr. Muhonen

Dr. Michael Muhonen, neurosurgeon and medical director of the CHOC Children’s Neuroscience Institute, strives to make sure that his team is always ready to employ the most innovative techniques using state-of-the-art equipment. His goal is to use non-invasive procedures, and, in cases where standard therapies aren’t available, to pioneer new ones, focusing on optimizing patient outcomes from surgery.

“There is less trauma to normal tissue when we can remove a three-inch tumor from a one-inch opening instead of a seven-inch opening,” explains Dr. Muhonen. “This is accomplished by aggressively using brain endoscopes and the newest stereotactic devices. We are also developing techniques to make incisions in the eyebrow, and to work under and around the brain rather than through it. We do everything we can to minimize pain, recovery time and physical evidence of surgery.”

Dr. Muhonen

But along with leading-edge surgical techniques and innovative procedures come compassion and empathy for each of Dr. Muhonen’s patients and their families. After all, he’s not just a world-class neurosurgeon, he’s also a father. When a child comes under his care, he does whatever it takes to reassure the parents that their child is in good hands.

“I strive to treat my patients and their parents as though they were my own family,” says Dr. Muhonen. “They have easy access to my cell phone and pager numbers so they have a ‘security blanket.’ At CHOC, we are all part of one big family.”

And Dr. Muhonen and his colleagues wouldn’t have it any other way.

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Thank you, Parents and Families!

As I help CHOC Children’s celebrate its 50th anniversary, the overwhelming feeling for me and many I’ve met around the hospital is gratitude.

For me, I’m grateful for the care I received when I fell out of that tree in 1964 and the friends I’ve made ever since. So many patients I’ve met are thankful for the bright futures and milestones they’ve achieved thanks to CHOC’s care.

And CHOC’s physicians are no exception. They’re grateful for the trust that parents and families instill in them each and every day. In this video, CHOC physicians express their gratitude.

Celebrate Doctor’s Day – Dr. Michael Muhonen

In honor of Doctor’s Day – March 30th –  we’ve been highlighting some of our doctors throughout the month of March! Check out this video with Dr. Muhonen, Medical Director of the CHOC Children’s Neuroscience Institute and Director of Neurosurgery, who shares what he is most excited about in The Bill Holmes Tower at CHOC Children’s.

Thank you Dr. Muhonen, and all of our CHOC doctors, for your dedication and commitment to the patients and families we serve!

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  • Celebrate Doctor’s Day – Dr. Richard Gates
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Magnet Magic

Using magnets to treat babies and kids with hydrocephalus sounds like something from a science-fiction movie, but it’s happening here at CHOC Children’s.

Hydrocephalus (or water on the brain) is a condition where there is a lack of absorption, blockage of flow, or overproduction of the cerebral spinal fluid (CSF) that surrounds the brain.  This can lead to dangerous buildup of fluid, increasing pressure inside of the head.

Some hydrocephalus patients need surgery, which usually involves placing a shunt into the child’s head to help drain the extra fluid from around the brain.

CHOC neurosurgeon Michael Muhonen, MD, was a primary investigator for clinical trials of Medtronic’s Strata Valve—part of a shunt system now being used worldwide to treat hydrocephalus.

Dr. Muhonen

Once surgically implanted in the brain, the settings on adjustable valves like Strata can be easily customized as the patient grows and changes. Dr. Muhonen uses a special magnet to change pressure settings in the shunt from outside the head. It’s noninvasive and totally pain-free.

Want to learn more about hydrocephalous and treatment options? Visit the CHOC Children’s Neuroscience Institute web site.

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