NORTH KINGSTOWN – Five days after her son, Treyvon, was born, lifelong South County resident Kayla Robinson learned he would need a series of open-heart surgeries to save his life. Treyvon had been diagnosed with multiple ailments to his heart, known as congenital heart defects (CHD), and underwent his first life-saving operation at just seven days old. Now, two years and two additional surgeries later, Treyvon is doing well cardiac wise while adjusting to a lifestyle that must account for his multiple heart complications.
The span of Feb. 7 through 14 is designated as National CHD Awareness Week, intended to shine a light on children like Treyvon in an attempt to raise awareness of and ultimately cure the world’s most common birth defect.
“When I found out that Treyvon had multiple, complex heart defects, I felt like my whole world was crashing down,” said Kayla. “I kept asking myself ‘why?’ Was there something I did? But it was nothing I did. My child that I thought was healthy would need a series of three open heart surgeries. I couldn’t believe it. I was scared, sad, confused and heart broken. I was not sure what this all meant for Treyvon’s life.”
At five days old, Treyvon was diagnosed with tricuspid atresia, coarctation of the aorta, ventricular septal defects, an atrial septal defect and transposition of the great arteries (primary arteries that carry blood away from the heart). He has a single-ventricle heart, meaning Treyvon only possesses one chamber within his heart that pumps blood to and from the rest of the body. The effect is a decrease in the amount of oxygenated blood getting to the body.
“CHDs are present at birth and can affect the structure of a baby’s heart and the way it works,” reads the Centers for Disease Control’s website. “They can affect how blood flows through the heart and out to the rest of the body.”
Treyvon’s immediate diagnosis changed Kayla and her husband, Joshua’s, life forever, and the instant necessity for their son’s surgery, which included the possibility of Treyvon’s death, would represent the difficult path that lay ahead for both parents and son.
“I had only 48 hours to learn as much as I could before Treyvon would undergo his first open heart surgery that would be eight hours long,” said Kayla. “There were chances he wouldn’t survive the surgery. I was scared he would die. I had to put trust in a stranger I had just met.”
The first heart surgery Treyvon underwent at Boston Children’s Hospital in October of 2017 involved the placing of a shunt that would allow some of his blood pumped to the body get to his lungs. During the operation, known as “the Norwood procedure,” medical professionals also addressed Treyvon’s aorta, in an effort to make the artery less narrow and allow more blood flow. The operation was a success, providing the Robinsons with some brief relief.
Shortly after, at three months old, Treyvon entered his second heart surgery, known as “the Glenn procedure,” which saw doctors attempt to direct the blood flow from Treyvon’s upper body and also address his left pulmonary artery, which was narrowing. The operation was again a success.
Finally, at two years old, Treyvon entered his third open heart surgery in November of last year in an attempt to direct the blood flow from the lower half of his body to the lungs. After many sleepless nights in the hospital, multiple chest x-rays and numerous visits to the cardiologist, this most recent operation, known as “the Fontan procedure,” was again a success. All three of Treyvon’s heart procedures were completed at Boston Children’s Hospital, and Kayla notes the current health of her son would not be possible without the hospital’s Dr. David Hoganson, Treyvon’s surgeon.
“Treyvon has undergone all three surgeries and is thriving thanks to his amazing surgeon Dr. Hoganson at Boston Children’s Hospital,” she said. ”He is a happy two year old who enjoys life and amazes all of us everyday with his strength. I worry a little less and I am learning to let him do more things other ‘heart healthy’ kids do.”
For Halloween last year, Treyvon dressed up as Dr. Hoganson, complete with scrubs, stethoscope and name badge.
Despite the good news, Treyvon will have to learn his limitations when it comes to participating in physical activities. Due to his heart condition, which will likely last a lifetime, as there is no cure currently for CHD, the two-year-old North Kingstown resident may not be able to be as physically active as his peers, and will have to come to understand his condition and the extra strain and risk it places on him.
“Treyvon will have to learn to go at his own pace and not worry about keeping up with other children who do not have his heart condition,” said Kayla when asked how her son is different from other children his age who do not suffer from CHD. “He takes blood pressure medication and aspirin daily. Something like the flu or RSV could easily be deadly for Treyvon because of his heart condition.”
“But with the surgeries he has undergone, our hope is to help him live a somewhat normal life,” she continued. “I am sure Treyvon will find something he loves. Later down the line, there can be issues with his liver from his third surgery. But we will tackle any of these obstacles as a family when they arise.”
Treyvon is also speech delayed, for which he undergoes occupational and speech therapy through early intervention programs. Due to his CHD, Treyvon still sees a cardiologist every three months. Doctors late last month diagnosed Treyvon with autism, a diagnosis his family is still processing, and he will be seeing a neurologist at Boston Children’s Hospital beginning in March.
According to his family, however, the complications have not deterred Treyvon’s personality. When asked to describe him, Treyvon’s older brother, Tyrelle, age 12, reports Treyvon as intrigued by all he sees.
“My little brother is very adventurous,” he said. “He likes to go outside, play with toys and watch ‘Paw Patrol.’ He pretty much likes everything.”
Something that does not hold Treyvon’s favor, however, are objects that remind him of his long and taxing medical history. His mother reports that when Treyvon sees people with gloves on, he gets tense, and does not want them anywhere near or touching him.
“This does affect other appointments like going to the dentist or pediatrician because it is now hard for him to trust that they won’t be poking him for blood and other procedures,” she said.
In addition, as Treyvon’s resolve has risen, so has the local and regional community around and in support of him. Shortly after his diagnosis, Kayla created #TeamTreyvon, a Facebook support group which now boasts over 1,100 members. There, Kayla regularly provides updates on Treyvon and his health, a melancholy mix of images of a toddler enjoying life as normal and, in one example, of a large scar going down his chest, a reminder of one of Treyvon’s many surgical experiences.
“We have been so lucky to have such a great support system from family, friends and even strangers,” said Kayla. “This has been an important part of this journey.”
Kayla and the Robinsons further extended their thanks to local businesses and organizations: Pier Pizza, Leo’s Pizza, Narragansett Bay Budokai, Matteo’s Bakery, Effi Filippou’s Twisted Pizza, Allie’s Donuts, Heroes for Hire New England, Nanny’s Sweet Treats and the North Kingstown United Methodist church.
“All of them have helped me with different events for CHD,” she said. “Many have donated to multiple events.”
When asked what she hopes readers will gain from Treyvon’s story, Kayla stresses that she hopes to raise CHD awareness in the effort of finding a cure. CHD is the most common birth defect in the world, and 1 in 100 babies are born with the condition, equating to about 40,000 effected babies each year in the United States. Further, there are about two to three million adults and children living with CHD in the U.S. right now and about 25 percent of children born with CHD will require at least one life-saving surgery before their first birthday. Approximately 85 to 90 percent of CHDs have no known cause or origin.
While Treyvon’s specific case has been an uplifting one, not all children are as fortunate. Approximately 100-200 newborns die in the U.S. each year due to unrecognized heart disease.
“With more awareness, CHD will get more funding and more children will survive,” said Kayla. “With more funding, I hope we will have a cure.”
Until that time, the life-saving-and-extending procedures, coupled with the determination and love from families, support from the local community, and the strength present in the hearts of those affected, will have to do.