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:

  • How RSV Changed the Way I Parent
    Andre was diagnosed at three weeks old with Respiratory Syncytial Virus (RSV) and hospitalized at six weeks. Learn the dangers of RSV.
  • Heart Month: Ryden’s Story
    Meet Ryden, a brave warrior who’s endured three heart surgeries at CHOC Children’s Hospital. His mom Kayleen shares his story in honor of heart month.
  • CHOC Heart Surgery Patient Joins Security Team
    Daniel was just 13 when he had open heart surgery. Eight years later he returned to CHOC as a security officer, helping establish a calm and safe environment at the ...

CHOC Children’s Expands Plastic Surgery Services

A pediatric plastic surgeon specializing in reconstructive plastic surgery has joined CHOC Children’s. Dr. Raj Vyas sees patients with a variety of complex conditions including clefts and craniofacial anomalies.

plastic surgery
Dr. Raj Vyas

“Care at CHOC is delivered in such a multidisciplinary fashion, allowing for complex higher-level discussions and nuanced treatment planning in both standard and exceptional circumstances. There is also an emphasis on safety and process improvement, both critical for a state-of-the-art facility serving a complex and diverse patient population,”Dr. Vyas says.

During his third year of medical school at UCLA David Geffen School of Medicine, the  Southern California native discovered that plastic surgery was his newfound passion.

“I unexpectedly fell in love with plastic surgery, particularly craniofacial surgery,” Dr. Vyas explains.  “My appreciation for the depth and breath of plastic surgery grew from my experiences during this rotation in medical school. I remember seeing a child with hypertelorism undergo a facial bipartition and I was fascinated.”

Following medical school, he completed a plastic surgery residency in Boston at the Harvard Combined Plastic Surgery Residency Program. He then completed a craniofacial surgery fellowship at New York University Medical Center, where he treated children and adults undergoing facial reconstruction for congenital anomalies or after suffering trauma and cancer. He also gained expertise in microvascular surgery and virtual surgical planning.

Dr. Vyas is working with the team at CHOC to build a multidisciplinary program in facial reanimation. By combining craniofacial surgery with microsurgery, he hopes to restore facial form and function in children and teens with facial paralysis.

“We have a great team at CHOC. Dr. Daniel Jaffurs has been an incredible mentor,” Dr. Vyas says. “My goal is to help make the program the best in Southern California and beyond.”

Dr. Vyas enjoys working with virtual scanning and 3D modeling technology available at CHOC, as it helps him plan and ensure optimal safety and precision before a procedure.

“Today, we are able to use cone beam CTs to significantly minimize radiation exposure while still obtaining high quality 3D imaging. This allows for virtual surgical planning that is both precise and extremely effective in reducing uncertainty in the OR,” Dr. Vyas explains. “In neonates with upper airway obstruction, for instance, who are scheduled to undergo mandibular distraction, we are able to customize bony osteotomies in a way that prevents injury to dental structures and nerves, while optimizing distraction vectors that improve the airway and maintain cosmetic considerations. We can also virtually anticipate the extent of facial movements and design custom splints that facilitate orthognathic (upper and lower jaw) surgery. The benefit of these types of pre-planned procedures are expanding as surgeons utilize this technology in a variety of craniofacial reconstructions.”

When this dedicated physician is not busy helping patients at the hospital, he volunteers with Global Smile Foundation, a nonprofit organization that treats children with facial congenital deformities in underserved countries. Most recently he went to Trujillo, Peru, where he helped over 100 patients.

“It’s so rewarding to work with children,” he says. “Their reconstructions have a long-life impact.”

Dr.Vyas is board certified in plastic surgery and a member of the American Society of Plastic Surgeons, American Society of Craniofacial Surgery, American Cleft Palate-Craniofacial Association and International Cleft Lip and Palate Foundation, among other professional organizations.

Related articles:

  • New Laser Treats Children with Vascular Anomalies
    Many babies are born with small blemishes—a little patch of redness here, a birthmark there. These typically aren’t cause for concern, and most go away on their own. But what ...
  • Genetic Syndrome Causes Cleft Lip, Palate in Sisters
    Just like most sisters, Tristyn and Raigyn Snyder will share toys, clothes and friends throughout their lives. They also share something unique: a genetic condition called Van der Woude syndrome. In ...
  • Understanding Pierre Robin Sequence in Babies
    CHOC Children’s is the only hospital in Orange County to offer comprehensive treatment and surgery for patients with a facial condition that can limit breathing in infants. Pierre Robin Sequence is ...