Lauren and James Toomey discovered something was wrong with their son’s heart during a 20-week anatomy scan at their OB/GYN’s office near their home in San Diego, California.
“We were in the exam room, and I noticed the ultrasound tech took a little bit longer than usual,” says Lauren. “When she left the room multiple times, I looked over at my husband and we knew something was wrong. That day, I got a call from my OB/GYN. She told us Theodore had hypoplastic left heart syndrome and it was very likely he would need surgical care after his birth.”
The Toomeys were scared, in shock, and in disbelief. They wanted a second opinion to see if their baby really had a heart condition. When she finally got an appointment in San Diego, the doctor confirmed Theodore’s HLHS diagnosis and told the family that Theodore did not have a left ventricle at all. The doctor gave Lauren and James termination options and said the baby probably wouldn’t survive to term, and if he did, it would be a hard life for their baby.
A complex heart
Theodore’s diagnosis is a complex congenital heart defect in which the left side of the heart is underdeveloped and cannot pump oxygen-rich blood to the body. Babies with this condition need a minimum of three open-heart surgeries. In addition to not having a left ventricle, Theodore had severe tricuspid valve regurgitation where the tricuspid valve does not close properly, allowing blood to leak backwards in the heart. Besides structural heart defects, Theodore had other complications including heart arrhythmias and blocks.
The Toomeys were determined to find a hospital and medical team that would accept their son’s case, no matter how far they’d have to travel from their San Diego home. Theodore’s case is unique and complex with numerous complications, and because of this, many pediatric heart centers that the family reached out to were not willing to pursue his case.
The Toomeys actually came across another pediatric hospital in Houston that performed surgeries for heart conditions and would offer an evaluation. Lauren called the hospital for a consultation, and the family made plans to move to Houston.
On October 31, 2021, Lauren, James, and their 2-year-old son Logan moved to Houston.
“Within the first week of being in Houston and meeting with the other heart center, I went in, and the cardiologist told us Theo’s case did not look good,” says Lauren. “He was not sure what their team could offer us, but that he would present Theo’s case at their surgical conference and get back to us. I told him I knew Theo was strong. He was kicking and acting so normal, and I knew he was meant to be here. When the cardiologist returned from the surgical conference, he told us it was a unanimous decision among the entire surgical conference team not to offer Theo any interventions, aside from palliative care. They would not offer surgery, heart transplant, or attempt any surgical intervention at all. They told us in their opinion, Theo was too sick for treatment and likely wouldn’t make it to term.”
The Toomeys never stopped advocating for their son
After this news, the family appealed to other top children’s hospitals across the nation.
“We called everywhere outside of Texas," says Lauren. "But one of the children’s hospitals that we happened to learn about during our research process was also in Houston, and coincidentally very close to our original heart center. We read as much as we could about the Children’s Heart Institute at Children’s Memorial Hermann Hospital and about Dr. Salazar. We learned that he specializes in rare heart defect cases. We thought maybe he could help us out. I reached out and Children’s Memorial Hermann Hospital was the first hospital out of more than 10 others to answer us immediately. We booked an appointment with Dr. Salazar two days later."
By the time Lauren met with Dr. Salazar in November 2021, she was seven months pregnant. During the consultation, Dr. Salazar reviewed Theodore’s case and felt confident that he could help them.
Jorge Salazar, MD, is professor and chief of pediatric and congenital heart surgery at McGovern Medical School at UTHealth Houston and an affiliated pediatric cardiothoracic surgeon at Children’s Memorial Hermann Hospital. Dr. Salazar serves as executive director of the Children’s Heart Institute at Children’s Memorial Hermann Hospital.
For the past 15 years, the Children’s Heart Institute at Children’s Memorial Hermann Hospital — named one of the best children’s hospitals nationally in Cardiology and Heart Surgery by U.S. News & World Report — has offered innovative solutions for patients with congenital or acquired heart disease, delivering high-quality outcomes.
In affiliation with McGovern Medical School at UTHealth Houston, the Children’s Heart Institute is one of the top congenital heart surgery programs in North America for patient care and outcomes, as evidenced by the most recent Congenital Heart Surgery Database (CHSD) reports from the Society of Thoracic Surgeons (STS). The affiliated team provides comprehensive care for newborns, children, and adolescents, with a smooth transition into adult congenital cardiac care.
A glimmer of hope
Lauren began seeing her maternal fetal medicine specialist, Jerrie Refuerzo, MD, at The Fetal Center at Children’s Memorial Hermann Hospital for the remainder of her pregnancy. Lauren was high risk due to hyperemesis gravidarum, a rare condition characterized by severe and persistent nausea and vomiting, weight loss, electrolyte abnormalities, and need for hospitalization. Dr. Refuerzo, a professor in the Division of Fetal Intervention in the Department of Obstetrics, Gynecology and Reproductive Sciences at UTHealth Houston, is the director of the Maternal Care Program at The Fetal Center and is affiliated with Children’s Memorial Hermann Hospital.
“We monitored Lauren’s pregnancy closely,” says Dr. Refuerzo. “At The Fetal Center, we provided collaborative care for her and her baby. We provided comprehensive prenatal care including close maternal monitoring assessing for appropriate maternal weight gain, preterm labor, and hypertension of pregnancy. We scheduled the timing of Lauren’s delivery in coordination with the pediatric specialists in the NICU, pediatric cardiology, and pediatric cardiovascular surgery.”
On January 5, 2022, Lauren and James welcomed their newborn son, Theodore, who was born at Children’s Memorial Hermann Hospital in the Texas Medical Center. He was delivered at 37 weeks’ gestation and weighed six pounds. The couple got to hold their son briefly before he was sent to the neonatal intensive care unit (NICU).
Theodore’s first heart surgery
On January 8, 2022, three-day-old Theodore had his first open-heart procedure. Dr. Salazar and his team performed the Norwood procedure, the first of three open-heart surgeries to treat HLHS. They rebuilt Theodore’s heart so the right ventricle can take over both jobs of pumping blood to the lungs and to the body. During that same procedure, the surgical team repaired Theodore’s tricuspid valve regurgitation by tightening the valve to prevent blood from flowing backward.
Dr. Salazar and his team’s primary focus was to give Theodore the opportunity to live a full life by doing whatever they could to restore normal function to his heart in the safest manner possible. Despite Theodore’s complex case, the team looked for the potential of what his heart could be.
“We considered all of the treatment options available before determining the best pathway to treat Theodore’s unique heart,” says Dr. Salazar. “When faced with extremely challenging heart cases like Theodore’s, we want to give as many kids as possible the most normal heart achievable. In Theo’s case, his first open-heart surgery was one of several steps we took to help improve his outcomes.”
An uphill road ahead
After the Norwood surgery, Theodore struggled a lot with arrhythmias and low cardiac output. During his struggle, his heart stopped. He had to have CPR twice, and the team was able to resuscitate him. During one of these episodes, Theo was put on ECMO, a heart-lung bypass machine that supports the body when a patient’s organs are too sick or weak to do the job.
The Pediatric ECMO Program at Children’s Memorial Hermann Hospital has been recognized by the Extracorporeal Life Support Organization as a Designated Center of Excellence. Since 1992, the program, one of the oldest in Texas, has used ECMO to treat more than 500 patients. As a high-volume program in Texas, and one of only two centers in Houston offering pediatric ECMO, the program supports about 30 children each year.
After being placed on ECMO, Theodore continued to have tricuspid valve regurgitation. He was transferred to the OR where Dr. Salazar repaired his tricuspid valve and performed a MAZE procedure (a surgery to address irregular heartbeats) to help with his intractable arrhythmias.
After going through so many uphill battles for the first four months, Theodore was able to have the Glenn procedure, after which he started to thrive. After the procedure, Theodore’s heart rate began to drop too low or peak too high. So Dr. Salazar implanted a permanent pacemaker. In addition to having a pacemaker, Theodore also takes medication to help manage his intractable arrhythmias.
Theodore spent six months in the Children’s Heart Institute’s Cardiac Intensive Care Unit (CICU). He fought against everything. He went through so much, but he remained strong.
Avichal Aggarwal, MD, an associate professor of pediatric cardiology at UTHealth Houston and affiliated with Children’s Memorial Hermann Hospital, oversaw Theodore’s care after birth and checked on him frequently during his hospitalization. Dr. Aggarwal manages babies with high-risk heart defects and those in need of a heart transplant. He reassured Theodore’s parents that in case the plans did not result in the desired outcome, they had a backup plan for a heart transplant if the need arose.
Mohammed Numan, MD, also part of Theodore’s cardiology care team, helped manage Theodore’s arrhythmias and other heart-related problems. Dr. Numan is professor of pediatric cardiology at UTHealth Houston, and a cardiologist affiliated with Children’s Memorial Hermann Hospital.
Theodore today
On June 20, 2022 — after six months in the hospital — the Toomeys were able to take Theodore home. They settled in Houston permanently to be near Theodore’s medical team.
Now, Theodore is just over a year old and doing better than anyone thought he would. He endured multiple heart procedures in his first six months of life, as well as a few other procedures after he left the hospital, including surgeries for tongue tie and Nissen fundoplication to treat acid reflux.
“Theodore is a strong heart warrior,” says Dr. Aggarwal. “When Theodore went home from the hospital, he was on oxygen support and over 17 different medications. He is now off oxygen, and we are monitoring him closely to wean him off many of his medications. Considering everything that he has been through during his first year of life, he is doing remarkably well. His progress thus far has been amazing.”
“There is always hope,” says Lauren. “For families facing daunting situations, it’s important to find a team you feel comfortable with, advocate continually for your child, and don’t let anyone stop you from fighting for them. Theodore is here and thriving because he had a team who believed in him. We are grateful to Dr. Salazar, Dr. Aggarwal, and the entire team at Children’s Memorial Hermann Hospital for giving him a chance.”
To learn more about Theodore and the Fetal Heart Program, click here.
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The Children’s Heart Institute is a collaboration between the affiliated physicians at McGovern Medical School at UTHealth Houston and Children’s Memorial Hermann Hospital. Typically, patients are seen on an outpatient basis at a UT Physicians clinic, with all inpatient procedures performed at Children’s Memorial Hermann Hospital.
Located within the Texas Medical Center, The Fetal Center is affiliated with McGovern Medical School at UTHealth Houston, UT Physicians, and Children’s Memorial Hermann Hospital.
Photo courtesy of Children's Memorial Hermann Hospital
Theodore Toomey is now a year old and thriving.
