Teddy’s Story: Our Son’s Brave Heart Journey Taught Us Never To Lose Hope
Sharmaine Villarello always knew she wanted to have children. But she never expected one day she would be outnumbered. She and her fiancé, Carlos, have three adorable boys – 4-year-old Ashton, 2-year-old Aiden, and their youngest son, Teddy, who just turned 5 months old.
“It took us a little longer to conceive Teddy,” said Sharmaine. “When I found out I was pregnant, I had just passed my real estate exam, and later that evening, I was having a restless night. I could not go to sleep. So, I decided to take a pregnancy test in the wee hours of the morning. To my surprise, the test came back positive. I woke up Carlos and both of us were just over the moon.”
When Sharmaine was 10 weeks pregnant, she was eager to find out whether she would be having another boy or a girl. She went to her obstetrician (OB) to get a blood test to confirm the gender of her baby and to scan for chromosomal abnormalities. A few days later, her OB called and wanted to see her right away to discuss the results. Not wanting to explain things over the phone, anxiety quickly sunk in. At that moment, Sharmaine had a gut-wrenching feeling something was wrong.
“My OB told me the blood test detected a 90 percent chance Teddy had Trisomy 21, or Down syndrome,” said Sharmaine. “I kept thinking to myself, the test said 90 percent – not 100 percent – so maybe the test is not accurate. It is not as definitive as an amniocentesis. But then I thought 90 percent is still a high number. From there, my OB-GYN referred me to Dr. Emma Rodriguez a high-risk maternal fetal medicine (MFM) physician at CHRISTUS Children’s.”
During her first visit with Dr. Rodriguez, the ultrasound technician checked Teddy’s growth and development. As an expectant mom, Sharmaine was used to coming in for these ultrasound appointments. But during this particular visit, nothing prepared her for what she would hear next.
“When Dr. Rodriguez entered the room, I asked her, ‘Do you see any markers for Down syndrome?’ She said, yes, we see several markers.’ I just started bawling. Then, I noticed a look of concern on her face when she proceeded to tell me Teddy had a serious heart condition. At that moment, I just cried and cried and cried. It was too much for me to handle all at once. When I found out Teddy had a heart defect, Carlos was with our two other sons. He did not accompany me for this visit because I thought it would be like any other doctor’s appointment. Dr. Rodriguez shared the news with Carlos over the phone because I could not talk. When I got home, we just hugged each other.”
Besides Sharmaine’s weekly check-ups with Dr. Rodriquez and her OB (who planned to deliver the baby at another San Antonio hospital), she visited a fetal cardiologist every two to four weeks to closely monitor any changes to Teddy’s heart condition. It turned out Teddy had multiple problems with his heart.
“My OB recommended a fetal cardiologist at the hospital where I planned to deliver him,” said Sharmaine. “When I was around 22 weeks, I had my first fetal cardiology visit. After running tests including an echocardiogram on Teddy, the doctor confirmed my son had Tetralogy of Fallot. He had many heart defects that would need to be treated with open-heart surgery after he was born.”
Tetralogy of Fallot (TOF) is a set of four congenital heart defects that occur together. The set of four defects include narrowing (stenosis) of the pulmonary artery, a large ventricular septal defect (opening in the wall between the right and left ventricles), overriding aorta, and an enlargement of the right ventricle. If left untreated, these heart anomalies can cause a number of serious complications including blood clots, infection in the lining of the heart and heart valves, abnormal heart rhythms, heart failure and death. This is a relatively common congenital heart disease which occurs in about five out of every 10,000 babies.
On March 28, 2022, when Sharmaine was 37 weeks, Teddy was born via C-section. He weighed 5 pounds, 14 ounces. He had features of Down syndrome but that did not matter to Sharmaine and Carlos. In their eyes, Teddy was perfect. They cradled their son briefly before he was transferred to the neonatal intensive care unit (NICU). While in the NICU, Teddy faced other complications. At one point, he turned blue and struggled to breathe. His breathing sounded like a seal and his oxygen levels dropped. Teddy had an NG-tube because he could not eat through his mouth. Some babies with Down syndrome have feeding and swallowing difficulties because of decreased muscle tone.
“We brought up our concerns multiple times about Teddy’s breathing, and the doctor told us he would monitor it but didn’t think it was too concerning,” said Sharmaine. “As a concerned mother, I did not take that well. The hospital where I delivered Teddy did not have an ENT specialist. After 36 days in the NICU, our son was transferred by ambulance to CHRISTUS Children's so that he could be evaluated by an ENT specialist.”
On May 17, 2022, Dr. Mark Boston, Chief of Pediatric Otolaryngologist, performed a microlaryngoscopy on Teddy which is a magnified, diagnostic examination of the larynx done under sedation, and a bronchoscopy, a procedure to examine the lungs and air passages using a thin tube that goes down the nose or mouth, to the throat and windpipe and into the lungs. When he examined Teddy, Dr. Boston noticed he had a narrow opening in his airway. Teddy was diagnosed with supraglottic edema and stridor resulting in upper airway swelling and obstruction. His airway was practically swollen shut which made it difficult for him to breathe. Teddy’s vocal cords were barely noticeable due to the severe swelling. Teddy was prescribed steroids which helped reduce the inflammation.
Due to the inflammation in his throat and because of his acid reflux, Dr. Katherine Barsness, the Chief of Surgery at CHRISTUS Children's recommended a gastric tube and a Nissen fundoplication. If left untreated, gastro-esophageal reflux disease (GERD) could cause scarring and stricture of the esophagus. In this surgery, Dr. Barsness performed a “floppy” fundoplication where she wrapped part of the stomach around the lower part of the esophagus to tighten up where the esophagus meets the stomach. But she didn’t make it too tight, just enough to prevent acid reflux.
Dr. Victor Bautista-Hernandez, a cardiothoracic pediatric surgeon at CHRISTUS Children's who would later perform Teddy’s open-heart surgery, along with the cardiology team, monitored Teddy’s heart. While in the NICU, he developed two types of heart arrhythmias (irregular heartbeats). It happened twice after his G-tube placement. His heart rate dropped, and his oxygen levels plummeted to dangerously low levels.
“Since his heart and oxygen levels were unstable, Dr. Bautista was not comfortable sending Teddy home until he received his open-heart surgery,” said Sharmaine. “In the weeks leading up to his TOF surgery, Teddy’s heart scans showed the stenosis (narrowing) in his pulmonary artery was worsening. While the hospital where I delivered my baby told me Teddy would need his first open-heart surgery at 6 months old, his doctors at CHRISTUS Children's told us that he would need it much sooner.”
On June 13, Dr. Bautista performed open-heart surgery on 3-month-old Teddy, who weighed 8 pounds, where he widened the pulmonary valve and enlarged the passage to the pulmonary artery. He also placed a patch over the ventricular septal defect to close the hole between the two lower chambers of the heart.
“Teddy was doing well but we knew the next 48 hours would be critical,” said Sharmaine. “When we saw him for the first time after surgery, Carlos and I were like, ‘Wow, he is pink. He isn’t blue anymore.’ Dr. Bautista explained everything he did to repair our baby’s heart. He didn’t have to replace Teddy’s pulmonary valve despite it being tiny and fragile. Carlos and I were blessed to have a wonderful care team. Everyone was amazing from the PICU and NICU doctors and nurses, to Dr. Bautista and our wonderful physician assistants, Jennifer, Amanda, and Lauren. They were easy to reach and gave us timely updates during Teddy’s surgery. They were so involved with our family and even helped us connect with the Ronald McDonald House, which was our home away from home.”
When Teddy was transferred from the PICU back to the NICU, Sharmaine and Carlos were excited as the days inched closer to bringing Teddy home. But then a few days before Teddy was about to be discharged from the NICU, he had another setback. He had trouble breathing because fluid was building up in his lungs. He developed a chylous effusion, a rare complication from his open-heart surgery which can result from traumatic injury to the chest. The condition occurs when chyle, a milky substance consisting of lymph and emulsified fats that is produced in the small intestine to aid in fat digestion, begins to accumulate in the chest cavity.
“Once the fluid was drained from his lungs, it built back up again,” said Sharmaine. “To prevent the effusion, Teddy was placed on a special diet. He had to abstain from breast milk due to the high fat content. Instead, he was fed via TPN (intravenous feeding) for a few weeks with a medical grade formula that had a low-fat content. It took Teddy about three months to fully heal.” After spending a combined total of 126 days in the NICU, Teddy was discharged from CHRISTUS Children's on August 1, 2022
Then, three weeks later, Dr. Saleem Almasarweh performed a balloon valvuloplasty (catheter procedure) on Teddy to open up his pulmonary artery since it started narrowing again. Now 5 months old, Teddy sees Dr. Almasarweh, his pediatric cardiologist, and Dr. James Noel, his pediatric gastroenterologist, on a regular basis for follow-up cardiac and GI care at CHRISTUS Children's. Teddy still uses his G-tube for his feedings since he still has difficulty swallowing, but other than that, he is doing amazingly well. Unlike before, his parents are now much more comfortable operating the feeding pump for his G-tube at home.
“Teddy is a rare, one-of-a-kind baby,” said Sharmaine. “Our son has gone through so much, but he never once gave up. Our little fighter faced every challenge with courage and strength. He was the constant reminder that when I felt overwhelmed, I knew I could never give up on him. Teddy is the strongest heart warrior. Despite what he had gone through, he still smiles all the time. He is happy and content with everything. We are incredibly thankful for all the wonderful doctors, nurses, nurse practitioners, respiratory therapists and the rest of the medical staff who helped save Teddy’s life.”
For more information about the Heart Center at CHRISTUS Children's, please visit: Pediatric Cardiothoracic Surgery | CHRISTUS Health. To learn more about Pediatric Services, please visit: Pediatric General Surgery | CHRISTUS Health; and to learn more about the NICU, please visit: Neonatal Intensive Care Unit | CHRISTUS Health.
Follow Teddy’s heart journey here: (3) Teddy’s Warriors | Facebook