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.
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.
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.
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.
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’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.
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 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.
It can be frightening to hear that your newborn or child has a congenital heart defect and needs surgery. Congenital heart defects are relatively common, affecting about one in every 100 newborns in the United States. Your child’s doctor will often refer you to a heart surgeon if your child needs surgery. But, how do you know if the hospital where the surgery will be performed offers the best heart program for your child?
Not all hospitals that perform pediatric heart surgery are created equal. Infants and children who have heart defects or require heart surgery need to be cared for by a team of highly trained specialists in a facility that is designed to meet their needs. It’s best to do research on the hospital’s heart program, even if the surgeon or hospital has been referred by your child’s doctor.
One of the first things to look for in a pediatric heart program is to determine if the hospital has a specialized program and team of care providers who care exclusively to cardiac patients. Your child needs more than just a general pediatric surgeon and nurses, and adult heart surgeons typically don’t operate on children.
“Surgeons will be the first to tell you that pediatric heart surgery is a team effort,” said Dr. Richard Gates, surgeon-in-chief and medical director of the CHOC Children’s Heart Institute. “When looking for a heart program, look for an intensive care unit devoted entirely to pediatric heart patients, and if there are pediatric heart-focused nurses, anesthesiologists and perfusionists.”
A reputable, high-performing children’s heart program will use only specially trained and board-certified pediatric cardiologists, thoracic surgeons and anesthesiologists, as well as cardiac nurses and perfusionists (people who operate the heart-lung machine during surgery). The program should also have more than one heart surgeon in case an emergency arises and your child’s surgeon is not available.
Also, does your child’s heart program have a dedicated pediatric cardiovascular intensive care unit (CVICU) staffed with board-certified intensivists? A board-certified, pediatric cardiac intensivist has additional training in caring for critically ill children in the CVICU, and specialized CVICUs have been shown to improve patient outcomes and reduce complications.
When researching a heart program, be sure to also check if the hospital reports its heart surgical outcome rates. A reputable hospital will report their outcome rates to the Society of Thoracic Surgeons (STS) for the public to see. STS rates will often be displayed on the hospital’s website, but you can also access these numbers directly from the STS website. Remember, you want your program’s rates to be above the national survival rates.
Other designations to look for are hospital safety awards, such as Top Hospital designation by the Leapfrog Group. Leapfrog’s Top Hospital award is widely acknowledged as one of the most prestigious distinctions any hospital can achieve in the United States. Top Hospitals have lower infection rates, better outcomes, decreased length of stay and fewer readmissions. In 2015, only 12 children’s hospitals in the nation and only two in California earned the respected award.
The CHOC Children’s Heart Institute offers state-of-the-art diagnosis and treatment for an entire spectrum of cardiac conditions. We have assembled an expert team of board-certified pediatric cardiologists, surgeons, intensivists, anesthesiologists, perfusionists, cardiovascular nurse practitioners, respiratory therapists, dietitians, social workers, child life specialists and case managers — all with specialized training and expertise. Learn more about heart surgery at CHOC.
“In the newborn population, there are many [heart] conditions that may need surgery. One of the things to remember is that these types of surgery that are being done in the newborn period are relatively new, at least in the past 10 to 20 years,” says Dr. Starr. “Because of the technology, now we’re able to perform complex surgeries.”
BLUE IS FOR BLOOD VESSEL
“When a baby is born with what’s called transposition of the great vessels, the two major arteries that come out of the heart are switched around,” says Dr. Starr. “The artery that’s supposed to go to the body is going to the lungs and the one that’s supposed to go to the lungs is going to the body. So the blood is mixed and the patient is blue, and that requires surgery in the newborn period.”
WHAT IS CHD?
“Congenital heart disease is a defect that forms while the baby is in the womb and the child is born with it, as opposed to an adult, who has coronary artery disease that’s acquired,” says Dr. Starr. “We usually separate out the disease into two categories: those who have enough blood flow to the lungs and those that do not,” says Dr. Starr.
SURGERY: WHAT PARENTS NEED TO KNOW
Before, during and after your child’s heart surgery, CHOC’s specialized team of doctors and nurses prepare parents for what to expect, including what their child will look like. Many parents wonder if their child will be like other kids after surgery. “Very frequently the answer is yes,” says Dr. Starr. “They may have special needs, but if you go to a playground you won’t know the difference between a child that’s had heart disease and a child that hasn’t,” she says.
The number of congenital heart disease cases that CHOC handles yearly: 200 – 300
Number of hours heart surgery can last: 3 to 4 hours
Number of beds in CHOC’s Cardiovascular Intensive Care Unit: 12
Dr. Starr is a member of the Society for Thoracic Surgeons and the Congenital Heart Surgeons Society. She previously served as director of the cardiac surgery program at Children’s Hospital of New Jersey and as an associate professor at the New Jersey Medical School.
Dr. Starr’s philosophy of care: “Each patient is different and you have to treat each patient as a unique patient. It’s not just about the heart, it’s about the whole child and their family.”
New York Medical College
General and Thoracic Surgery