Waylon's Story: Baby Receives Surgery for Tetralogy of Fallot
Surgeon Repairs Child's Rare Heart Condition
Nothing had gone as Jordan and Katie Guidry planned following the birth of their son, Waylon.
Before Waylon could receive the heart surgery he so badly needed, his parents learned their surgeon was leaving the area. The Guidrys were suddenly faced with uprooting from their home in Fate, Texas (Rockwall County) and taking their very sick 6-month-old son out of town for surgery, most likely to either Houston or Chicago. Waylon was born at 27 weeks and 3 days with a rare heart condition called Tetralogy of Fallot, which creates obstruction to blood flow to the lung and is associated with a hole between the pumping chambers of the heart .
As they considered their options and prepared to pick up their lives, the phone rang one afternoon. It was Waylon’s cardiologist to tell them a new heart surgeon, Vinod Sebastian, M.D., would take on the case at Cook Children’s Medical Center in Fort Worth.
“Jordan and I didn’t know what to do,” Katie said. “We researched our options and we just couldn’t make up our minds. When we got the phone call, we were so relieved. Dr. Sebastian received all of Waylon’s history and was confident he could repair the Tetralogy of Fallot with one surgery and also spare his pulmonary valve, which traditionally has to be cut open and resected during this repair.”
The family arrived at Cook Children’s on Nov. 28, 2016 and Waylon underwent heart surgery on Dec. 14. Tetralogy of Fallot is a rare heart defect that occurs in about 5 out of every 100,000 babies.The surgery is a complicated one because the congenital heart disease results in four main congenital heart defects:
- Ventricular septal defect (VSD)
- Override of the aorta over the VSD
- Right ventricular outflow tract obstruction
- Right ventricular hypertrophy
ifelong monitoring is required due to the increased incidence of arrhythmia, exercise intolerance and reduced right ventricular function.
Often times when the surgery is performed, surgeons cut open and resect the pulmonary valve in the baby’s heart. If that happens, it usually means a heart surgery later in life to replace the valve. That was not the case for Waylon.
“As far as Waylon’s heart, his long-term prognosis is excellent,” Dr. Sebastian said. “Waylon is unlikely to need any further cardiac surgical intervention. In the past, Waylon’s condition was incurable. Even 10 years ago, the surgical repair routinely involved cutting open and resecting the pulmonary valve. His heart surgery is very gratifying because his heart problems are no longer an issue.”
Waylon and his family will face other non-cardiac health issues in the future, but for now the family feels very fortunate to have found Cook Children’s and Dr. Sebastian.
“He’s doing great now,” Katie said. “We are so grateful and blessed for having this opportunity to come to Cook Children’s and for our son to receive all the help he needs."
Waylon has been at home now for more than two months and Katie is busy planning his 1 year old birthday party on May 30.
Tetralogy of Fallot (fah-LO) is a combination of problems caused by a birth defect in the structure of the heart that changes the way blood flows through the heart.
Each year, 4 out of every 10,000 babies born in the United States have the condition, which was named after the French doctor who first described it in the late 1800s, Étienne Fallot. About 10% of all babies born with a heart problem have tetralogy of Fallot (TOF).
The four related problems that together make up tetralogy of Fallot are:
- Ventricular septal defect (VSD), which is a hole in the septum, or wall, separating the two lower chambers, or ventricles, of the heart. The septum acts as a barrier that prevents blood from both sides of the heart from mixing together. But when there is a VSD, blood high in oxygen from the left ventricle can mix with blood low in oxygen from the right ventricle. VSD is the defect that can lead to the other problems associated with TOF.
- Pulmonary stenosis, a narrowing or thickening of the valve that connects the right ventricle to the pulmonary artery, a blood vessel that carries low-oxygen blood from the heart to the lungs, where the blood receives more oxygen and then returns to the heart. With pulmonary stenosis, the heart has to work harder than normal to pump blood to the lungs. Often, the amount of blood reaching the lungs is below normal.
- Right ventricular hypertrophy (hi-PER-truh-fee), which is a thickening of the muscular wall of the right ventricle. The thickened wall can block the flow of blood through the pulmonary valve, which allows blood from the heart to flow into the lungs.
- An "overriding aorta," which means the artery that carries high-oxygen blood to the body is out of place and arises above both ventricles, instead of just the left ventricle, as in a healthy heart. This allows some blood that is low in oxygen to flow into the aorta and out to the body, instead of to the pulmonary artery, which would normally take it to the lungs to pick up oxygen.
As a result of these defects, too little blood goes to the lungs. The low-oxygen blood then circulates to the rest of the body and too little oxygen reaches the body tissues.
If tetralogy of Fallot goes untreated, a child may have:
- dizziness, fainting, or seizures
- a higher risk of developing endocarditis, an infection of the inner layer of the heart
- high pressure in the right side of the heart that can cause an irregular heartbeat, called an arrhythmia
A child whose TOF is not repaired might need to limit participation in competitive sports and other physical activities. Many infants who have surgery to correct the defect do very well, participate in normal kid activities, and live to adulthood.
About Dr. Sebastian
Vinod Sebastian was born and raised in India and has pursued specialty training in the US in surgery, cardiothoracic surgery and pediatric cardiac surgery. During training he realized his passion of becoming a pediatric cardiac surgeon and the unique ability to provide life altering treatments to neonates, infants, children and adults with congenital heart disease.
He trained at Stanford University with Frank Hanley and VM Reddy in the field of pediatric cardiac surgery. During this time he trained in techniques of “single stage unifocalisation” and “extremely low birth weight cardiac surgery” at one of the largest practices in the world.
Dr. Sebastian is happy to be back in Texas at Cook Children's and providing pediatric cardiac surgery services in the Dallas/Fort Worth area.
In his spare time, he enjoys being outdoors, reading, watching cricket, tennis and swimming.
When it comes to your child, any kind of surgery is concerning. When that surgery is related to the heart, it can be a very frightening time. The cardiothoracic surgeons in the Cook Children's Heart Center are recognized for their skill and expertise. And, because they perform an average of 400 surgeries each year, they know how challenging it is for you and your child, and they will work closely with you to ensure you understand all your child's surgery will entail and the risks involved in order to provide the best plan of treatment. Click to learn more about the program.