When Sienna Grace was born, a little fighter came into the world. Her parents were in awe of their new baby. They were also very emotional because of Sienna’s pre-birth diagnosis of Tetralogy of Fallot. Sienna’s mother, Sarah Lund Wilson, is a pediatric neurologist affiliated with Children’s Memorial Hermann Hospital. Her research focuses on protecting the pediatric brain and studying the impact of cyanosis, or decreased oxygen in the bloodstream, associated with heart defects on brain development and overall cognition. Her research is guided by experienced mentors including a leading pediatric surgeon affiliated with the Children’s Heart Institute at Children’s Memorial Hermann Hospital.

Sienna at a few days old.Photo courtesy of Children's Memorial Hermann Hospital

As a new physician and mother concerned about the effects of low oxygen saturation in newborns on brain development, Sarah was faced with a personal challenge when she learned her first child would be born with the same condition. She candidly asked her daughter’s doctor, 'Is my child’s brain going to be okay?' The response she received was reassuring: 'Not only will your child be okay, but she will thrive.'"

A fateful diagnosis

At her 20-week ultrasound, Sarah and her husband David learned that their baby had an anomaly. An obstetrician affiliated with Children’s Memorial Hermann Hospital recommended she connect with a maternal-fetal medicine (MFM) specialist also affiliated with the hospital.

The MFM met with Sienna’s parents at The Fetal Center at Children’s Memorial Hermann Hospital, where a fetal echocardiogram revealed Tetralogy of Fallot (ToF) in their unborn baby. This heart diagnosis is a complex, congenital (present at birth) heart condition involving four related heart defects that commonly occur together. With ToF, a patient typically has a ventricular septal defect (VSD) — a hole between the heart’s main pumping chambers; plus pulmonary stenosis, where the valve between the heart and lungs blocks normal blood flow from the heart ventricle to the lungs; and extra thick heart walls; finally, the patient’s aorta, the main blood vessel leading from the heart to the body, is in the wrong location.

Unlike most patients who come to The Fetal Center without extensive knowledge about their baby’s condition, Sienna’s mother had enough expertise to elevate her concerns. Despite being highly knowledgeable and caring, she remained understandably nervous and asked all the right questions, while carefully following the recommendations of her specialists throughout her pregnancy and delivery. She approached the situation with cautious optimism.

For patients with a fetal heart diagnosis, The Fetal Center team partners with the Children’s Heart Institute at Children’s Memorial Hermann to provide care for complex cases, such as Sienna’s. The affiliated multidisciplinary teams talked with Sienna’s parents about the plan for the remainder of her pregnancy, the new baby’s delivery, and post-birth care treatments.

Advanced care

Throughout her pregnancy, Sienna’s mother continued to see her own patients and progressed through her research on the impact of a heart condition on a baby or child’s brain. She was thinking of her soon-to-be-born baby girl Sienna the whole time.

It was a lot for her and David, but their baby’s heart surgeon was a great comfort to the growing family.

There is a much greater understanding now of how conditions and procedures can potentially impact a child’s neurodevelopmental future compared to 20 years ago. Research has revealed the critical periods of development when the risk is greatest and how to minimize those risks, many of which occur during surgery. Advanced technology and techniques, developed over time, are used to protect the brain while performing heart repairs. By applying these advances, The Fetal Center and the Children’s Heart Institute are able to provide care for babies with the most complex heart conditions, like Sienna.

Since the brain depends on adequate oxygen delivery from the heart and lungs, the better those organs function, the better the brain operates. During heart surgery, the goal is not just to avoid harming the baby’s brain but to help unlock its full potential.

As often occurs in babies with congenital heart disease before birth, Sienna was diagnosed with intrauterine growth restriction. A congenital heart condition can affect the baby’s growth during pregnancy. Ultrasounds are conducted, and a growth curve is plotted for each baby. Ideally, babies who will need heart surgery should be born at 39 weeks’ gestation so they are better prepared for surgery after birth, but when their growth slows, the recommendation is to deliver at 37 to 38 weeks’ gestation.

Sienna’s mother was able to reach 37 weeks’ gestation before delivery was induced, with close coordination between her affiliated care team which included a pediatric cardiologist, pediatric cardiovascular surgeon, and fetal interventionalist. It was a total team effort from beginning to end.

Sienna’s birth

Sienna’s mother was in labor for 28 hours, and on October 5, 2022, Sienna entered the world. “The care was excellent, and there were a lot of clinicians checking on both of us,” she says.

Sienna was not breathing immediately after birth and was resuscitated, intubated, and moved to the Level IV Neonatal Intensive Care Unit (NICU) at Children’s Memorial Hermann Hospital — where the highest level of advanced and specialized medical care for newborns and premature infants is available.

After a couple of hours, Sienna no longer needed respiratory support. After five days in the NICU working on her feeding, Sienna went home with her parents.

Heart surgery at 4 months

At just four months old Sienna underwent her first surgery, which included a complete Tetralogy of Fallot repair, closing the VSD with a patch, and opening the right ventricular outflow tract. “It was very challenging for David and me to let her go to the OR,” Sarah says. “We knew she was in excellent hands, but we also were aware of the risks involved. We had confidence in the team, and that gave us hope.”

Now, after repair, Sienna has the right amount of oxygen delivered to her brain from her heart and lungs, which allows for better performance and normal development. Sienna is doing well.

Terrific twos

Sienna is tall for a 2-year-old, at around 80 percent of expected height for her age, and she’s meeting her development milestones appropriately.

Sarah, Sienna, and David celebrating her birthday.Photo courtesy of Children's Memorial Hermann Hospital

“She’s a little energizer bunny,” says David. “She takes swimming lessons, likes to play with the dog and cat, and loves to ride her toy car around the house.”

“I was in my first two months of being an attending pediatric neurologist when I delivered my baby girl,” Sarah recalls. “I’ve worked for years with so many of the providers and care teams who looked after me and Sienna. I learned a lot from them during this time as both a doctor and as a patient. Now, back at work, I spend part of my time in my job caring for babies after their stay in the NICU. I now have a better understanding of what these parents are going through. That stays with me when I am treating their children.”

Learn more about Sienna’s story here.

Learn more about the Children’s Heart Institute at Children’s Memorial Hermann Hospital 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.