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.

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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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Once a CHOC Oncology Patient, Now an Oncology Nurse

As a typical, happy-go-lucky six-year-old, Shaina was playing outside with her brother before dinner time, when her back started hurting.

She laid down on the couch to rest, but when her mom called her for dinner, she was too weak to even make it to the table. A trip to a local emergency room followed, and kidney stones were suspected. She was eventually transferred to CHOC Children’s. After additional testing, Shaina was diagnosed with neuroblastoma, a cancer that often starts in the tissue of the adrenal glands, on top of the kidneys. What they thought originally might be kidney stones, was actually the pain of her kidneys being crushed by a tumor that was growing inside her.

She underwent emergent surgery two days later to remove the tumor and one of her kidneys, and overcame the odds that were stacked against her.

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Shaina at age 6, as a patient at CHOC

“I was so young when I was diagnosed, so I don’t remember a lot of the scary parts of that time, but ever since, my family has been telling me stories about how wonderful my physicians and nurses were to our whole family during that time,” she says.

Those stories are part of the reason that six-year-old Shaina grew up to be a hematology/oncology nurse with the Hyundai Cancer Institute, in same hospital that saved her life almost two decades ago.

After surgery, Shaina was in and out of the hospital for chemotherapy treatments and a stem cell transplant. The first one hundred days after such a transplant are crucial to ensure a patient’s health and safety, and her family had to be abundantly cautious that her environment was as clean and safe as possible. At the end of those hundred days, her family threw a big party at their house to celebrate making it over the hump.

She relapsed a few months later.

Experimental treatment at various hospitals throughout Southern California followed, and three years later, she was cancer free for good.

Even during this time, Shaina knew she would return to CHOC someday.

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As a child fighting cancer, Shaina knew should would return to CHOC someday as a nurse.

Fast forward a few years and Shaina was a high school student. Searching for volunteer hours as part of her curriculum, she sought out volunteer opportunities at CHOC as a way to say thank you to the hospital that saved her life as a child.

She joined the Child Life team as a play room volunteer, helping normalize the hospital environment for patients utilizing the same play rooms she had sought an escape in while she was a patient.

She now works alongside some of the same physicians and nurses that cared for her as a child.

One of her primary oncology nurses, Dana Moran, gives her a big hug whenever they pass each other in the hallways.

“Shaina was so little when she was a patient here- she was so fragile and scared, but she was a strong kid with a strong personality, and that helped her get through her challenges,” Dana says. “Now it makes me proud to see her happy and healthy and back at CHOC caring for other kids.”

Her pediatric oncologist, Dr. Lilibeth Torno, keeps a photo from Shaina’s nursing school graduation on the desk in her office.

“I am really proud to have seen her grow and mature as a person and as a colleague in oncology,” Dr. Torno says. “I have seen her strength as she overcame challenges that cancer survivors go through and she did it successfully!”

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Thank You, CHOC Nurses!

As if I needed an excuse to shout from the treetops how wonderful nurses are, it’s National Nurses Week!

When I hurt myself back in 1964, one of my strongest memories was how wonderful my CHOC nurses were. Today is no different: Nurses at CHOC are on the front line of care for patients, and their roles and responsibilities have changed dramatically through the years.

Let’s look at some pictures of CHOC nurses through the years.