You Don’t Prepare for Newborn Heart Surgery

When Allison had her second child, she was expecting a normal, healthy baby. What she got was a miracle. The big day had come and Allison and her husband, Matt, traveled to a local hospital for her planned C-Section, eager to meet their new child. “We were so excited because we had planned everything ahead of time, and the only surprise we were expecting was the gender,” Allison says. “That’s when God stepped in and said, “You can’t plan everything.” “I Knew Something Was Really Wrong” Evan arrived a seemingly healthy baby boy — but within a few hours, Allison and Matt realized something wasn’t right. “Matt went to watch the nurses give Evan a bath, and he came back and said, “I don’t want to worry you, but his oxygen levels aren’t great,” Allison recalls. “He came back a second time and said a cardiologist was looking at Evan. The third time he came back, two doctors were with him. That’s when I knew something was really wrong.” Evan was diagnosed with a rare congenital heart defect known as transposition of the great arteries. The hospital they had chosen for his birth wasn’t equipped to treat the defect, so Evan was transferred to CHRISTUS Children’s. “They actually came and transported Evan themselves, which I thought was incredible,” Allison says. “The transporters came into the room, and I immediately felt a sense of safety. They knew what they were doing and that everything was under control.” Coming to CHRISTUS Children’s When Allison and Matt arrived at CHRISTUS Children’s, they immediately noticed a difference. “I walked in the door, and they said, “You must be Evan’s mom. Let’s get you a wheelchair,” Allison says. They anticipated our every need. They even let us sleep in the intensive care unit where Evan was. They got us shampoo, towels, pillows, and blankets. The entire staff treated us like we were family.” Two days after Evan was born, Allison and Matt met with the surgeons who would be operating on Evan the following morning. They explained everything and answered all the questions. Allison and Matt also met with child life specialists at the Hospital, who shared information about developmental expectations and what life after surgery would be like. The next day, Allison watched in tears as her three-day-old boy entered the operating room. Then she waited. “I felt confident because I had seen specifically what would happen during the surgery,” Allison says. As a mother, that makes you feel good knowing – if your child is going to have surgery – you are getting the best doctors and the best care possible.” Four hours later, Evan’s heart was fixed. Today, Evan is a healthy, happy four-year-old. He has nothing to show for his dramatic first week of life, except a “cool” scar on his chest. Last spring, Evan’s cardiologist cleared him for all activities, and by the fall, Evan was running in San Antonio’s annual ING Kids Rock one-mile marathon.

A Wonderful Christmas Present

In October 2012, Ray and Cyndi welcomed the birth of their third child and named her Mackenzie Rae. When Mackenzie was born, she was having trouble breathing and she was transferred to the Neonatal Intensive Care Unit (NICU) at CHRISTUS Children’s, where specialists told them that Mackenzie had a ten percent chance of surviving. “I’ll never forget that day. The staff was right there with us, and one nurse told us she’d never give up on Mackenzie. We trusted they were going to do everything possible to save our baby’s life,” shared Cyndi. Celebrating the Holiday at Home After nearly two months in the NICU, Mackenzie went home on Christmas Eve. “We put 100 percent of our faith in God and in the hospital staff,” said Cyndi. “We knew that Mackenzie would be okay.” Mackenzie continues to receive care at CHRISTUS Children’s. We are there for Mackenzie and for all the children in our community. We exist to serve you and your loved ones — to provide hope, healing and recovery.

It’s a Miracle Josh is Even Alive Today

“It’s a miracle Josh is even alive today,” said Stefanie, Josh’s mother. “When we adopted him at four months old, he had never had any medical care and was facing several health issues. I still believe the way he came into our lives was divine intervention.” In May 2000, Stefanie sat in the CHRISTUS Santa Rosa Hospital emergency department waiting room, unaware that her life would change when a young mother entered with a small baby in a stroller. Josh was only four months old the first time he entered CHRISTUS Children’s, formerly CHRISTUS Santa Rosa Children’s Hospital. “Instant Connection” Stefanie and her husband, James, had just recently adopted their first child, one-year-old Olivia and were fostering another, four-month-old Chance. While in the waiting room, the young mother sat with Stefanie and shared her story. Without hesitation, Stefanie befriended the girl and helped her find a shelter. Several weeks after learning of the young mother’s inability to care for her child, Stefanie became aware of the opportunity to adopt Josh and they welcomed him into their home with open arms. “When I first saw him that day in the emergency room, I could tell he had some underlying issues, but then he looked up at me and smiled,” said Stefanie. “We had an instant connection and I didn’t know it at the moment, but my life was changed forever.” Severe Medical Challenges The day after his placement, Stefanie made arrangements at CHRISTUS Children’s to have Josh undergo a health assessment and started treatment right away. He was diagnosed with Spina Bifida, clubbed feet, caudal regression syndrome, sacral agenesis, neurogenic bladder and failure to thrive. With faith in their hearts, Stefanie took Josh to CHRISTUS Children’s once a week for two months to have his tiny casts removed, feet stretched and then recast to prepare him for a surgery that would be the most monumental in his life. In August 2000, Joshua endured an orthopedic surgery that would give him the possibility of walking someday. Josh is the “superstar” 7th grader that everyone knows and loves at La Vernia Junior High School. He played Little League baseball for many years and, not seeing his disability as a hindrance, joined the 7th grade football team. He runs, plays, and argues with his siblings. Josh has a love for the outdoors and is particularly interested in animals, bugs and other creatures. “Josh will have lifelong issues that he will have to manage on a daily basis. There are more surgeries in his future, but we have peace in knowing that our CHRISTUS Children’s family will be there to support and encourage us every step of the way,” Stefanie added. “The hospital’s Spina Bifida clinic has been a vital part of Josh overcoming and exceeding so many obstacles. They have been like a family to us, giving us hope, prayers, advice and guidance, and we are forever grateful.” “The Greatest Gift” Today, Josh is a happy and thriving 13 year old who has overcome and exceeded expectations physically, cognitively and emotionally. He is mobile in a wheelchair or on crutches and often crawls and climbs to play and interact with his peers. “God had truly given us the greatest gift,” said Stefanie. “Josh inspires so many because of the incredible humility, wit and humor he was able to carry on through this adversity.”

Marceline and Phoebe A.

Marceline and Phoebe were born at 23-weeks-gestation at CHRISTUS Santa Rosa Hospital – New Braunfels. The twins both weighed just a little over one pound each and were extremely frail. Marceline and Phoebe were immediately airlifted to CHRISTUS Children’s for further treatment and were admitted to the Neonatal Intensive Care Unit (NICU). Upon arrival, doctors quickly got to work to care for these tiny girls. Phoebe underwent surgery right away to repair a small bowel perforation and continued to have surgeries on her GI tract. Marceline had extra blood flowing to her lungs and received surgery to close the artery as well as surgeries to correct cranial abnormalities. Today, Marceline and Phoebe are two fiery five-year-olds. 

Holly and Heather C.

Holly and Heather were born severely premature, weighing just one pound, 10 ounces, and two pounds, respectively. The identical twins were rushed to the Neonatal Intensive Care Unit (NICU) at CHRISTUS Children’s and were fighting for their lives.

Holly has undergone eight resuscitations, 17 brain surgeries, two lung surgeries, two intestinal surgeries, three eye surgeries, one cranial reconstruction, and more. Thanks to generous supporters like you, the sisters beat all the odds and continue to grow stronger together.

Marc D.

In October 2016, 18-year-old Marc had an infected hair follicle and his mom knew something was not right. After several tests and hospital visits, Marc was referred to specialists at CHRISTUS Children’s. Doctors performed a biopsy and learned Marc had Leukemia.

Marc underwent several rounds of chemotherapy, spinal taps, and radiation therapy over 3.5 years and completed his chemotherapy in January 2020. Marc tries to stay positive and plans to start sharing his story with the community with hopes of helping others in the fight against cancer.

Camilla G.

Camilla was born with Trisomy 21 – Down Syndrome and had two holes in her heart. She underwent emergency life-saving surgery. Camilla’s mom, Jennifer, had fundraised for Children’s Miracle Network Hospitals for several years as a Walmart associate. She had never seen where her fundraising efforts went, until she had to experience services at a children’s hospital first-hand when Camilla was born. Camilla continues to see several specialists at CHRISTUS Children’s.

Violet G.

When 12-year-old Violet started losing weight, experiencing mild panic attacks, and losing color in her skin, her parents sought help from her pediatrician. After running labs on multiple occasions, results showed significant for moderate anemia, which prompted a referral to pediatric hematology at CHRISTUS Children’s. After more tests, Violet was diagnosed with myeloid-lymphoid neoplasm with eosinophilia (MLN-eo), a hematologic neoplasm in which, due to an underlying gene arrangement, the bone marrow makes too many copies of a type of blood cell called eosinophils. Her diagnosis is extremely rare in pediatric patients, especially in females, making the diagnosis very difficult and unusual. Violet’s doctors also did a baseline check of her organs and found that her heart had suffered some damage from her diagnosis. Violet started immunotherapy and heart treatment and she slowly began getting better. Violet is doing great today and hopes to grow up to pursue a career in the medical field to help other patients like herself.

Maddie K.

In December 2016, Maddie went in for a routine pediatric check-up where her pediatrician noted she was underweight. At four months old, Maddie weighed only nine pounds, when her expected weight should be 13-15 pounds. The family scheduled an appointment at CHRISTUS Children’s, were cardiologists diagnosed Maddie with a large ventricular septal defect (VSD), a small aortic valve, and a small hypoplastic aortic arch, all serious congenital heart defects. Maddie’s VSD and small hypoplastic aortic arch required immediate surgical repair. Physicians performed the life-saving surgery with no complications. Today, she is happy, healthy, and thriving – and busy, too! Maddie started kindergarten, plays T-ball, and takes dance classes.

Emmalee M.

Emmalee was born with a cleft lip and nasal deformity, a partial left palate, and a hemangioma on her right eyelid. Her cleft lip was causing Emmalee to have difficulty bottle feeding and she was struggling to gain healthy and necessary weight. If left untreated, the hemangioma, a noncancerous, dense group of blood vessels, above her right eye could potentially damage her eyeball or even cause blindness. Corrective surgery was her best option for a healthy, normal life. From November 2015 to 2018, Emmalee underwent corrective surgery for her lip, nose palate, and eyelid. Month by month, her doctors noticed a drastic change in her appearance and health. The surgeries were all a complete success. Once Emmalee’s lip healed, she was able to bottle-feed properly and slowly began to gain weight. The hemangioma that was once present on her tiny face had disappeared. Because of her partial palate, she will require a bone graft when she is older, but for now, Emmalee is enrolled in Pre-K for SA and enjoying spending her days making new friends and learning.