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. Michael Recto

As an internationally-recognized expert in interventional pediatric cardiology Dr. Michael Recto’s goal is to provide world-class cardiac care. He treats children with serious congenital heart defects, and performs both diagnostic and interventional cardiac catheterization procedures.

Dr. Recto takes great pride in having worked throughout his career with some of the top cardiologists in the field. When he joined the CHOC Children’s Heart Institute in 2013, he witnessed the same level of talent and knew instantly he was in the right place, he says.

Today, Dr. Recto’s approach to delivering care is to treat his patients and their families the same way he would like his family to be treated. He has learned a lot from his patients and their families along the way, and is still surprised at the touching moments he experiences on a daily basis.

“I had a patient just the other day with an atrial septal defect and I explained to this child’s family that this particular hole between the two atria was going to be hard to close. The patient would possibly require open-heart surgery,” Dr. Recto says. “The patient’s father looked at me and said, ‘We have a lot of faith in you.’ I was indeed able to close the defect in the cath lab. When I came out of the procedure and told the entire family the good news, they stood up and applauded and the father gave me a big hug. I was not expecting that. A moment like that is one of the best things you can experience. It was truly gratifying and humbling.”

 

Dr. Michael Recto
Dr. Michael Recto

“Everyone on the CHOC team is an expert in their field. We have experts in echocardiography (fetal, transthoracic and transesophageal echo), cardiac MRI, electrophysiology and cardiac intensive care. I am proud to be part of such a talented team,” he says.

Dr. Recto enjoys spending time in CHOC’s state-of-the-art cardiac catheterization laboratorities, where he is able to diagnose problems and if needed, perform an intervention and help a patient right on the spot, he explains.

Dr. Recto is board certified in pediatrics and pediatric cardiology. He attended medical school at University of the Philippines College of Medicine, followed by a pediatric internship and residency at New York University Medical Center. He completed a pediatric cardiology fellowship at Mount Sinai Medical Center in New York City, and a pediatric interventional cardiology senior fellowship at Texas Children’s Hospital, Baylor College of Medicine in Houston, under the tutelage of Dr. Charles E. Mullins, known as the Father of Modern Interventional Pediatric Cardiology.

In addition, he Dr. Recto is a fellow of the American College of Cardiology and a fellow of the Society for Cardiac Angiography and Interventions, among other professional organizations. He has co-authored numerous articles in publications such as Pediatrics, Pediatric Cardiology, and Journal of the American College of Cardiology, to name a few.

Long before Dr. Recto was treating serious heart conditions, however, he thought of becoming an engineer or architect. His mother asked if he had ever considered a career in medicine. Although unsure about this career path, he decided to give it a try. After his first semester as a pre-med student, Dr. Recto felt that he had never studied as much in his life, he says jokingly, and decided he better continue the hard work he had started. He was eventually accepted to the University of the Philippines College of Medicine, where only a small number of students are accepted every year. The young doctor was first exposed to pediatric patients during his rotating internship at the Philippine General Hospital, where patients with some of the most complex clinical problems are sent for care. That experience solidified his passion for pediatrics.

When Dr. Recto is not caring for patients at CHOC, he enjoys spending time with his wife, a pediatric emergency medicine physician at CHOC, and their three grown children.

Prior to coming to CHOC, Dr. Recto served as both chief of pediatric cardiology and director of cardiac catheterization at Tulane Medical Center in New Orleans. Previously, he was chief of pediatric cardiology and director of inpatient transplant services at Kosair Children’s Hospital in Louisville.

Related posts: