Rai's Heartfelt Journey: A Story of Trust and Healing at CHRISTUS Children's

"Trusting your parental instincts is so important, even if it means facing difficult decisions for your child," said Ray and Stephanie Lara, reflecting on their 13-month-old daughter Rai’s experience with an uncommon heart condition. "Equally critical is having faith in a skilled medical team – a trust we were very fortunate to find and place in the CHRISTUS Children's Heart Center."

Ray and Stephanie's journey with Rai, from her first breath, has been marked by a series of challenging decisions and uncertainties. Each step of Rai's early life brought them face-to-face with complex medical issues. Their path, filled with highs and lows, demonstrates the importance of a strong parent-medical team partnership in navigating a child's serious health concerns.

An Unexpected Beginning: Birth and Challenges at Home

"Everything during pregnancy seemed normal, but when Rai was born, we knew something was different right away," said Stephanie, remembering the day her daughter was born. "She was born close to my own birthday, and we were really looking forward to it. But after she arrived, we noticed she wasn't like our first child."

Rai arrived into the world with immediate signs that something was unusual. Born with facial deformities and a noticeable notch in her right eyelid, Rai's first days were marked by a flurry of medical assessments. The newborn baby went through a lot of testing in the first week of her life just to ensure she could thrive on her own.

As Rai grew, her parents noticed more troubling signs. "Feeding her was nothing like it was with our first baby. She needed a light flow, couldn't drink too much, and had a lot of difficulty with physical food," Ray shared. It was during these everyday moments at home that their parental instincts kicked in. "I knew something was wrong. I had to say something. It was a parent's gut feeling," he said.

By the time Rai was 11 months old, her condition seemed to worsen. Stephanie and Ray couldn’t quite pinpoint exactly what was going on. The family's proactive approach led them to CHRISTUS Children's, where the expertise of the medical team came into play. A CT scan revealed the true extent of Rai's condition: a vascular ring constricting her esophagus and trachea. "Hearing the diagnosis was heart-breaking. It explained so much about her struggles with eating and breathing. And it confirmed that our instincts were on track, even though we were scared for our daughter’s health," the parents said.

The Turning Point: Surgery and an In-Depth Look at Rai's Condition

Rai's surgery at CHRISTUS Children's Heart Center was not just a medical procedure; it was a life-altering intervention for a little girl with a rare and complex condition. In addition to being born with Goldenhar Syndrome, which caused her craniofacial abnormalities, Rai was diagnosed with a vascular ring, a rare congenital heart defect that occurs less than 1% of babies and is responsible for less than 3% of congenital cardiac conditions.

The parents soon learned that Rai was born with her trachea and esophagus running right through the center of her heart, which made the surgery complex. This anomaly involves the formation of a ring of blood vessels that encircles and compresses the trachea and esophagus, leading to difficulty in breathing and swallowing, especially solid foods. Just a week before Christmas 2023, Rai was set to undergo her life-changing surgery before her first birthday.

"The vascular ring in Rai's case was particularly challenging due to its location and the compression it exerted on her vital airways," explained Victor Bautista-Hernandez, MD, PhD, thoracic and cardiac surgeon at CHRISTUS Children's Heart Center. "In Rai's specific condition, the vessels were abnormally formed around her trachea and esophagus, a complex and delicate area closely intertwined with the heart. While this condition did not necessitate open-heart surgery, the procedure is still extremely intricate, requiring a great deal of precision.”

The decision to proceed with surgery was made after careful consideration and numerous tests. "We conducted detailed imaging studies, including CT scans and echocardiograms, to map out the exact anatomy of Rai's vascular ring," Dr. Bautista-Hernandez added. "Our goal was to perform a surgery that was as minimally invasive as possible, yet effective enough to provide immediate and long-term relief."

Rai’s procedure, a vascular ring division, required the careful separation of encircling vessels to alleviate compression. The hospital's advanced facilities, including a dedicated Cardiac Surgery Operating Room and specialized cardiac teams in the Neonatal and Pediatric Intensive Care Units, were instrumental in the procedure's success. Utilizing cutting-edge surgical techniques and state-of-the-art equipment, the medical team focused on ensuring the best possible outcome with minimal trauma. The surgery, entering through her left shoulder blade, left only a small 2-3 inch scar and remarkably took just 90 minutes, showcasing the efficiency and expertise of the CHRISTUS Children’s surgical team.

Post-surgery, Rai has shown remarkable progress, transitioning into a lively and vibrant child living a normal life. Her resilience and the expert care she received have paved the way for a future filled with promise and normalcy. Most importantly, she is now eating and breathing with no issues.

CHRISTUS Children's utilizes some of the most advanced medical technologies currently available. The hospital's operating rooms are specially designed to facilitate complex pediatric surgeries, while the post-operative care units are staffed with experienced pediatric cardiac care professionals.

In addition to the surgical team's expertise, the hospital's approach to comprehensive care played a pivotal role in Rai's treatment. Following her surgery, Rai received close monitoring in the pediatric intensive care unit. A multidisciplinary team, which included pediatric cardiologists, cardiac surgeons and specialized nurses, worked collaboratively to ensure a smooth recovery. Nutritionists and physical therapists were also integral to her post-operative care, providing assistance with feeding difficulties and aiding in her overall physical recovery.

Rai is also scheduled to undergo cosmetic surgery related to her craniofacial abnormalities at CHRISTUS Children's once she turns 2 or 3 years old, when her tissue is more developed.

The success of Rai's surgery at CHRISTUS Children's Heart Center demonstrates the hospital's dedication to offering specialized and compassionate care for children facing complex medical conditions, such as Arrhythmias, Hypoplastic Left Heart Syndrome and Ventricular Septal Defect. Rai's case highlights the significant impact that advanced medical care, delivered within a supportive and nurturing environment, can have on improving the lives of young children and their families.

Trusting Instincts and Embracing Hope

As Stephanie looks back on their journey, her gratitude towards CHRISTUS Children's Heart Center is clear. "The level of care and empathy we received was extraordinary. From the nurses to the doctors, everyone treated Rai with such tenderness, as if she was part of their own family," she said. Ray, joining in, spoke to the emotional support that was integral to their experience. "They weren't just health-care providers; they became part of our support system, always available to address our concerns and ease our fears. Their approach went beyond just medical treatment – it was about providing holistic care and emotional support."

The family expressed gratitude for the holistic experience provided by CHRISTUS Children's, noting that "even their food services staff and meals were fresh and amazing. These little things really make a big difference for your family when you're spending a lot of time in the hospital."

For families navigating similar paths, Ray offered heartfelt advice. "Stay resilient, trust your instincts, and never shy away from voicing your concerns. Remember, as a parent, your intuition and your voice are powerful tools in your child's care. Surround yourself with people who uplift you and maintain trust in your medical team. They are more than just doctors and nurses. They are allies in your journey towards your child's well-being."

As we celebrate Heart Month 2024, the story of Rai Lara serves as a reminder of the strength found in families and the transformative power of expert medical care. The dedication of CHRISTUS Children's Heart Center to providing specialized, compassionate care shines through in stories like Rai’s.

To learn more about the life-changing programs and services offered at CHRISTUS Children’s Heart Center, visit our website. Here, every child's heart, including Rai's, finds a place of healing, hope and expert care.